On the euthanasia of severely-disabled newborns

Neonatal intensive-care unit at São Judas Tadeu Hospital in Terra Boa, Brazil. Photographer: Manu Dias/GOVBA.

Neonatal intensive-care unit at São Judas Tadeu Hospital in Terra Boa, Brazil. Photographer: Manu Dias/GOVBA.

Determining the quality of someone’s life is nigh impossible without first making some basic assumptions. First we must assume that another mind exists, and that this mind can exist in more than one mental state. Next, we must ascribe positive value to some ideal, attainable mental state and negative value to some unideal, attainable mental state. Finally, we must claim to be able to deduce whether another mind is in one of these aforementioned ideal or unideal mental states.

In the case of persons who have at least some basic capacity to communicate and understand their surroundings, we can have them communicate their mental state to us as being ideal or unideal. The newborn infant, however, has a very limited capacity for communication (through crying, smiling, laughter, etc.) and cannot fully understand their surroundings. This does not, however, mean we can know nothing about their mental state, and certainly does not warrant a default presumption of an ideal mental state and therefore an adherence to a sanctity-of-life principle in potential end-of-life decision-making.

To start with, as described by Eduard Verhagen’s 2005 article (p. 959) on the Groningen Protocol for Euthanasia in Severely Ill Newborns (which is actively used in the Netherlands and a basis for practice elsewhere), we can know a lot about a newborn’s probable mental state by observing “different types of crying, movements, and reactions to feeding. [Which allow us to create p]ain scales for newborns, based on changes in vital signs (blood pressure, heart rate, and breathing pattern) and observed behavior, […] to determine the degree of discomfort and pain.” Since persons who can communicate unideal or ideal mental states can have known vital signs, and these signs repeatedly correlate with these particular states, we can translate a great deal of these medical facts (alone) into what we have good reason to suspect as particular mental states in the infant.

We can also consider future medical facts and likely future quality of life using a similar method. For example, for a newborn with severe spina bifida we might be able to determine whether curvature of the spine is likely and if so how severe it would be. This would tell us whether the newborn would develop into a person who could make use of a wheelchair, would likely suffer from epilepsy, or would have normal brain development or develop a cognitive disability which might compound existing problems if they kept living, etc..

These sorts of facts were employed by medical and legal professionals in the case of ‘Baby M’, who was born in Melbourne, Australia, in July of 1989 and lived just 12 days (Kuhse, Quality of Life and the Death of ‘Baby M’, 1992, p. 234). Like many similar cases in which neonatal euthanasia and potential end-of-life decisions have arisen, Baby M was born with a very severe case of spina bifida. The treating doctors, in conjunction with the parents, decided that the newborn’s quality of life was so terrible that they should opt for a ‘conservative’ treatment regime whereby their primary focus was to treat only the symptoms and otherwise keep the newborn comfortable. However, sanctity-of-life activists attempted to personally intervene by appealing to the parents. When their intervention was unsuccessful they notified police, who subsequently launched an investigation but became satisfied that the treatment regime was appropriate. The state’s coroner agreed with the police assessment, and explicitly stated that quality of life was a relevant factor in her conclusion (Kuhse, p. 241).

This seems like a thoughtful and, for that reason, laudable conclusion given the terrible diagnosis of the infant and the demonstrably poor current and likely future quality of life. As Loane Skene argued (The Quality of Life and Disabled Infants, 1992, p. 998): “If, on the basis of the current diagnosis of an infant’s condition, the clear prognosis is that the infant’s quality of life is likely to be so ‘demonstrably awful’ that no reasonable person would choose to live it, then active treatment need not be given to prolong the infant’s life [although treatment to alleviate pain and distress should still be given].”

However, if an infant’s quality of life is indeed this ‘demonstrably awful’, it might not only be justifiable to withhold life-prolonging treatment, but in fact it could be a moral obligation to bring about its death as soon as possible. If we agree that such a quality of life is so unideal that “no reasonable person would choose to live it” (Skene, p. 998), then what would make a reasonable person choose to linger in that state if they were already in it? The only scenario in which such a reasonable person (if we agree with Skene’s ‘reasonable person’ argument) might linger in it is if they did not have the personal capacity to bring about their own death. This is the case for the newborn. That the newborn happens to lack the capacity to consciously choose to bring about its own death is a mere accident of circumstance, and we should not allow it to block a less egregious outcome.

Imagine that someone has just fallen into a large, active incinerator. Neither you nor the person who has fallen in can shut off the incinerator or get the person out. They will now certainly die an agonising death over the next few minutes. Next to you are two loaded guns – one which contains bullets and another which contains tranquiliser darts. Shooting a bullet will kill the person immediately whereas shooting the tranquiliser dart might ease the person’s suffering, however you cannot be completely sure. Do you shoot either of the guns or do you do nothing at all? Almost no one could morally defend not at least shooting the tranquiliser dart, I think, since it might at least ease the person’s pain. However, what if the tranquiliser dart is ineffective and the person continues to writhe in pain? Surely then we should shoot the gun with bullets. In this analogy, we should view terminally-ill newborns who are in extreme suffering like we view the person who falls into the incinerator. Further, we should view it as a moral obligation to, if the darts don’t sufficiently reduce the person’s pain, use the gun with bullets.

Given that it is possible to accurately infer facts pertinent to a newborn’s mental state, and this mental state is relevant to wellbeing and quality of life, there is no defensible reason to assume an ideal mental state exists and thus adhere to the principle of the sanctity-of-life (especially as a default position). Upon knowing something about the probable mental state, if it is deemed to inflict a terrible quality of life upon the newborn (now, in the foreseeable future, or both), ‘conservative’ treatment regimes like that used with Baby M are justified, if not obligatory.

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Is morality in contradiction with our evolution?

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A mother gray langur (Semnopithecus entellus) holding her infant. Photographer: Nevil Zaveri.

Humans, Homo sapiens, are primates. Our unique genetic heritage can be traced back to 85 million years ago, when the distinctive order of Primates arose from mammals. It took more than 82.5 million years for the first hominids (ancestors belonging to our genus, Homo) to evolve. This first species of the genus, Homo habilis, fashioned rudimentary stone tools and lived in small groups similar in size to modern chimpanzees. This small group size afforded two distinctive advantages: protection from predators and enhanced efficiency in food gathering. In other words, our ancestors cooperated to survive (much like we do today). However, it wasn’t for another two million years and many evolutionary steps later, that the first anatomically-modern humans evolved (between 400,000 and 250,000 years ago). During this long stretch of evolutionary time, and even in the relatively short period since, humans have evolved to become the type of animal they are today – flaws and all.

The consequence of this, is that as our societies and technologies have progressed, various traits and features which once ensured our species’ development and survival are now less relied upon or are altogether inappropriate. These include anatomical vestiges, like the recurrent laryngeal nerve, which instead of running directly from the upper parts of the vagus nerve in the head and neck to the larynx (our voice box), it makes a massive detour down to the heart and back up again. This same anatomical vestige exists in the giraffe, where the nerve travels from the top of the neck all the way down, around the heart, and back up again. This unnecessary and indirect route is all due to the fish, where this nerve first developed and had a very direct route. Humans also possess behavioural vestiges like the ‘goose-bumps’ reaction we get when we are cold (which helped keep our hairy ancestors warm) and when we are frightened (which helped make our hairy ancestors look bigger, meaner, and more threatening to potential attackers).

It’s probably unimportant for us to bother changing the routes of our nerves to be more efficient, or removing now-innocuous in-built behaviours like ‘goose-bumps’, but would it be worthwhile (or is it even possible) to change our innate human intuitions which influence what we call morality? In the case of impartialist normative theories, I think we can consciously reason past them to some extent and that this is worthwhile, but we are sometimes working against the grain of our biological hardwiring.

Though this is not always and completely the case. Sun-tailed monkeys, Cercopithecus solatus, a fellow primate, are known to make warning calls to their group when they spot nearby predators. However, this also generates attention from the predator and generally increases the chance of the individual who makes the warning call of being captured as prey. Through an ethical lens, this seems like a heroic case of self-sacrifice for the good of the many. But how many exactly and what is their relation to this many? Since their mean group size is 17 individuals, and these individuals both know and are closely related to one another, it might not have the same gravitas as the archetypal, heroic self-sacrifice we might imagine of some humans – whether historical or mythical figures like William Wallace and Hercules, or more recent activists like Gandhi and Martin Luther King Jr.

This type of kin altruism exhibited by sun-tailed monkeys (and other species), whereby altruism is limited to a few known, especially related, individuals, is also shown in humans. In a psychological experiment on humans lead by Jens Koed Madsen from University College London, participants held a painful skiing position for as long as they wished to, and the longer they held that position, the greater a reward was for a related family member. Participants held the painful position longest for those they were related most closely to, confirming that human altruism is affected by the relatedness to the benefiting individual.

While we may have evolved to be partial to those closest to us, and impartialist theories like utilitarianism and Kantianism go against this evolutionary bias, it is helpful that we have at least some intuitive altruism (albeit not necessarily ‘true’ altruism – it being, in natural contexts, directed primarily or exclusively towards our kin, i.e., kin altruism). Nevertheless, using sound argumentation to extend this altruism may enable us to direct our intuitive altruism towards a larger number of less-related individuals, like the millions around the world suffering and dying from preventable causes.

However, reason might not always win over vestigial moral intuitions, at least at first. Jonathan Haidt’s psychological experiments on moral knee-jerks to what could be reasoned as a morally acceptable instance of incest, demonstrated that (at least in our initial reaction to some scenarios) our intuitions can persist in spite of being demonstrated as unreasonable. This could indicate that reason simply takes its time or needs to be very convincing to have an effect on our thinking.

Intentions Matter

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Young man crossing a flooded street in an Indian slum. Photographer: Thomas Leuthard.

In a recent column by Oliver Burkeman for The Guardian on why profiting from giving isn’t always bad, he said that “starving refugees care about food and shelter, not motives.” In essence, he takes an old consequentialist position – doing the right thing for the wrong reasons (or even just partly) is just as good as doing the right thing for the right reasons if the outcomes of both actions are indiscernible. There’s just one problem here though: the outcomes are not indiscernible, and starving refugees care about motives more than food and shelter, even if they don’t know it themselves.

Famous in the field of moral philosophy is the doctrine of double effect. Take the classical example of comparing a terror bomber and a strategic bomber. The terror bomber intends to kill civilians to weaken the enemy’s resolve while also destroying military targets. Contrast this with the strategic bomber who intends to only destroy military targets but foresees that he will also kill civilians in the process. Most would consider the terror bomber to have acted in a less ethical way than the strategic bomber, even if they both kill exactly the same number of civilians and destroy the same military targets.

As a utilitarian myself – someone who is interested in maximising the happiness and utility of sentient beings – I am presupposed to fall under the traditional consequentialist spell of somehow denying that the terror bomber is a worse person than the strategic bomber. After all, their actions were exactly the same, and had the same consequences. Aren’t I then going against my basic ethical tenets to say that one act is worse than the other? Well, yes, but only if I think about the short-term and think about individual acts (such as bombing military targets or giving to charity) in isolation of likely future acts.

After the bombing, suppose both the strategic and terror bomber return to base and the next day are sent out on another mission. This time they must survey a village to look for military targets but not bomb. Suppose that both bombers find no military targets, just civilians. If the same intentions and motivations still exist in both bombers as in yesterday’s bombing run, we can see that their actions will be very different. The strategic bomber will return to base with just as many bombs as he left with, whereas the terror bomber will have massacred as many citizens as possible. Clearly, then, although his first act had the same consequences as the strategic bomber, his future actions are dissimilar in a dramatic fashion.

In the same way, Bono giving money to boost his ego or public image (if that is what he is doing) is not helpful to starving refugees in the long-term. Yes, it might be just the same amount of food and water he would give if giving from purer motives, but what if he is presented with a scenario in the future in which his ego will lead him to do something bad or not quite as good as he might have otherwise. Say, for example, that he is given the opportunity to give to two charities. One charity says it can save a life for every $4,000 Bono gives to it, and the other charity says it can save a life for every $3,000. If acting out of compassion or with the intention of helping as many people as possible, Bono would probably choose to give to the latter charity who will save more lives. But what if that charity is unwilling to participate in any media or marketing with Bono and the charity who will save less lives say they will put on a big party and press conference, gaining lots of media attention. What will Bono choose then? His ego might lead him to save fewer lives.

Of course, I don’t claim to know Bono or his intentions. His motives might be perfectly pure and he certainly has done a lot for many people in need. However the intentions of our actions and our motivations to act matter a lot more than Oliver Burkeman claims in his column. Indeed, more starving refugees might be saved from death and disease if we rid ourselves altogether of egotistical influences in our giving to charities. In other words, no, if starving refugees have an interest in food and shelter then they have an even bigger interest in the intentions behind that giving.

Australia’s dying dignity

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An empty hospital bed. Photographer: Elo Vazquez.

“If I were to keep a pet animal in the same condition I am in, I would be prosecuted. If you disagree with voluntary euthanasia, then don’t use it, but don’t deny the right to me to use it.”

Those were some of the last words of Robert Dent, a Northern Territorian who suffered a long battle with prostate cancer until he became the first person in the world to be euthanised under a statute law. He passed away peacefully on the 22nd of September, 1996. But few fellow Australians have been legally afforded the same mercy. In a rare reminder of the territories’ sovereignty-status, the federal Parliament responded months later by passing laws to overturn those created by the government in the Northern Territory which allowed physicians to assist those who wished to die. Since then, thousands of people have suffered slow, miserable deaths where they otherwise might not have wanted nor needed to.

One such person was Laurie Strike, who passed away in Perth last month after suffering a lengthy treatment for terminal cancer. Earlier this year, he had appealed to the public and our politicians to legalise voluntary euthanasia.

Although the Western Australian parliament have not debated the issue since 2010, other state parliaments have had more recent legislative proposals. Before the state election in Tasmania, voluntary euthanasia legislation was narrowly defeated despite favourable public opinion polls. In South Australia, independent MP Bob Such had, in 2012 and 2013, drafted a private members’ bill for voluntary euthanasia. Before the state election, he admitted that his quest was unlikely to be successful, though given his new political leverage in the hung parliament his chances may improve. (Sadly, however, in macabre irony, he has recently fallen seriously ill.) Religious groups and others opposed to euthanasia have vigorously lobbied legislators on all occasions.

So why do anti-euthanasia campaigners force people like Mr Strike to suffer? Many would appeal to human rights, such as the OHCHR’s International Covenant on Civil and Political Rights. Article 6(1) states that: “Every human being has the inherent right to life. This right shall be protected by law. No one shall be arbitrarily deprived of his life.”

One moral argument is that Mr Strike shouldn’t have been able to die with a physician’s assistance, since he was a human being and therefore had a right to life which, in this case, would not have been protected. However this ignores the very essence of what we mean in this context when we talk about a ‘human being’. In fact, merely belonging to a particular species of animal, Homo sapiens, is rather meaningless in moral terms. It’s truer to say we value the presence of particular qualities in human beings more than we value membership to a particular species. Do we really hold that the value of a human being is the same if we compare someone who is permanently brain-dead and someone who is not? Most would consider the brain-dead human being to actually be dead, despite the fact that, in medical terms, the organs and tissue are being kept alive. Clearly, then, when people judge the brain-dead human being as dead, they are actually judging the capacities and qualities of that human being: their ability to communicate, to understand their surroundings, to find enjoyment in life, and so on. All these things come with being a person, not merely a human being.

It is truer, therefore, to say that every person has the inherent right to life, not that every human being does. Though if Mr Strike was a person, then doesn’t the same problem raised by those opposed to euthanasia remain? Aren’t we still depriving him of life or failing to protect his right to life? The Australian Human Rights Commission, upon examining the euthanasia laws passed by the Northern Territory in 1996, say “no, it does not violate our human rights“. They came to this conclusion partly for two reasons: first, the 1996 legislation had limited scope (it only applied to terminally-ill patients who wanted to die); and second, extensive statutory safeguards were put in place to prevent abuses (protecting patients who did not want to die).

However, even if we didn’t accept this finding, how is it that we can say to have established a ‘right to life’ without giving individuals a right to control their life, including how it ends? A ‘right to life’ cannot be meaningful if one cannot exercise that right in ways which make it, in the full sense, a ‘life’. Said differently, what good is a life you don’t have power over? Or one in which you suffer unbearably, hopelessly, and without any or much enjoyment? These might fall under the literal definition of a ‘life’, but to say that they all, irrespective of their features, have the same quality is to deny the factual differences. To further say that individuals must accept what others ascribe to them as the values which constitute a life – or, as is sometimes said, a life worth living – is to say that you know how to live someone’s life better than they do. While we might be able to argue for this in the case of children, how can we reason the same for a fully mature, capable adult of sound mind? Simply, we can’t.

For this reason, some of those opposed to legalising voluntary euthanasia might agree that perhaps euthanasia itself isn’t necessarily immoral, but rather in legalising it we risk abuses and these risks outweigh the benefits. This should be a concern of any responsible community wishing to legislate on these issues, but is largely an empirical question. Being that this matter is far from uncontroversial it is unsurprising then to find a multitude of interpretations of what data is available to us regarding abuses of voluntary euthanasia laws. That said, almost all authors admit two things: (1) that we can never eliminate one hundred percent of the risk; and (2) that some level of risk can be mitigated by legal and practical safeguards. The question is whether enough of the risk can be prevented so as to justify the benefits. We can’t always stop the occasional corrupt cop or malicious or incompetent doctor, but we can make reasonable and serious attempts to avoid foreseeable harms, just like we could for euthanasia laws. For example, we can require psychiatric assessment of patients who request euthanasia (to ensure the person is of sound mind and not just depressed); we can require that multiple, independent physicians agree on the diagnosis, prognosis, and current state and nature of suffering in the patient (to minimise physician-related errors or misjudgements); we can require that requests for euthanasia are repeated, sustained over time, and that only the patient herself is involved in these requests (to prevent unscrupulous friends or family influencing the patient); and so on. It is also worth pointing out that if any abuses have occurred, it is not automatically a strike against voluntary euthanasia laws generally but rather only one statute or perhaps its related institutions and legal or medical practices. Such abuses – again, if they have occurred – may have been preventable given a better policy.

As pragmatic asides, there are also some shared benefits for those left behind after someone dies by voluntary euthanasia. Two prominent benefits were illustrated in mock adverts created as part of the ABC’s television program ‘Gruen Planet’, which analysed advertising practices and trends. In one of the show’s segments, agencies compete to sell the unsellable, and were once asked to persuade Australians that we should make euthanasia compulsory for seniors by the age of 80.

“I never met my granny, because she lived very far away,” begins one advert with a little girl sitting alone, clutching a family photo. “I would have made more time somehow,” a man says about his mother passing away. It’s almost universally true that people put off seeing their relatives or parents. None of us normally intend to, it’s just that we get caught up in our day-to-day lives. When terminally ill patients go through years of treatment and their health very gradually declines, it can be just as easy for family members to miss their opportunity to spend significant time together. Giving these terminally ill patients the option of setting a definite time to die not only gives back some small sense of control in a situation they have had no control over, but it also gives them and their families specified time to spend wisely and meaningfully.

Where the first advert spoke to emotion, the second speaks to reason. “With resources stretched to the limit and the elderly living longer, the time is fast approaching when we have to make some tough decisions,” says an elderly gentleman as he leans out of his hospital bed. He walks down the hall to the maternity wing, looking into a room with a mother caring for her newborn. “Perhaps that time is now.”

While voluntary euthanasia should, in its primary focus, be about the patient, we cannot deny that there are some economic and emotional benefits for those left behind. Being aware of these benefits, including those which may motivate abuses, is vital to assessing any legislative proposal on this issue. Prescribing morals or crying wolf without even hearing a howl, however, is irresponsible, and causes women and men like Mr Strike to suffer unnecessarily long, painful deaths. Let’s not let our common dignity bear a similar fate.