Tuesday, May 13, 2014

What should we do about severely impaired newborns?

My column from the Kingston Whig-Standard of May 10/11 2014

I was invited last week to be part of a panel discussing whether doctors should be permitted to actively end the lives of certain severely-impaired newborns with parental consent.
The host of the debate was a prestigious thoracic surgery society. 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.
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.
One of the reasons for why we feel uneasy, to put it mildly, when we discuss what to do about severely impaired newborns, is, of course, that unlike adults in comparable circumstances the newborns do not have the capacity to make their own choices. In fact, the newborns’ developmental state is such that they don’t even have the capacity to desire continuing life. 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? Should we withdraw nutrition and hydration while providing palliative care so that he doesn’t suffer? Should we actively terminate his life to end his nightmare quickly and painlessly, as well as that of his parents? In our scenario the parents asked that their son’s life be ended quickly and painlessly. Should the doctors oblige them, was the question we were asked to address.
On the one hand we have – typically – religiously motivated opponents of euthanasia for severely impaired newborns. 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.
My opponent also argued that we should ask ourselves whether we would want to live in a society that terminated the lives of such vulnerable newborns. That’s a good question to ask as it forces us to think more carefully about the values that are at stake in such situations. 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.
This view, in turn, requires us to rethink how we go about doing medicine, at least to some extent. It would require us to give up on what is called the sanctity-of-life doctrine in medicine and replace it with a quality-of-life ethic. There is no point in maintaining human life for the sake of it if that human life cannot enjoy a moment of its existence and is trapped in a never-ending cycle of immense pain and suffering. A quality-of-life ethics would not merely ask ‘do you exist’, but ‘do you have a life worth living?’, or ‘will you have a life worth living?’ We are not there yet, but significant changes in this direction are occurring in many countries.
My esteemed colleague also suggested that the infanticide proposition violated human dignity. It’s a strange thing this ‘human dignity’ rhetoric. If you were to ask yourself whether human dignity is important, you’d almost certainly say that it is. We all want to be treated with dignity. In my field, in medical ethics, you can find boatloads of declarations and guidelines having the dignity moniker included for good measure. Surprisingly though, when you look closer at it you will discover that this is about as question-begging a term as there ever was. It has actually no meaning in its own right. For Catholics human dignity means living by Catholic values, to Muslims it means living by Islamic values, to secular folks it could mean living by secular ethical values, and so on and so forth. Typically, when it comes to controversial ethical questions, human dignity is deployed to hide those actual values, mostly because they are likely to be more controversial than to just say ‘human dignity’. So, the long and short of it is, in the discussion about the severely impaired newborn, human dignity gives us neither action guidance nor action justification. A couple of years back, the judges on our Supreme Court, when looking at the euthanasia issue, also availed themselves, among other reasons, of the human dignity trope. It tells you something that both sides used it and neither side could show that their opponents just happened to use it wrongly. To the theologian I debated it was clear that euthanasia would violate human dignity because of his religious views on end-of-life matters. A secular ethics person could well conclude that human dignity was violated by not permitting euthanasia. So, we were non the wiser. Well, more to the point, we agreed to disagree.
What would your preferred policy on severely impaired newborns look like?
Udo Schuklenk teaches bioethics at Queen’s University. He tweets @schuklenk.

Should we get used to an age of compulsory confinement?

Here's my column from the Kingston Whig Standard of May 02/03 2014.

Yes, I know, Rob Ford went again on a drug-induced binge and blurted out his usual slew of racist, sexist, anti-gay views. He promised to disappear for four weeks and then return to save Torontonians tax monies, or something like that. I don’t live in that town, so whatever.
People elect the leaders they deserve. Also in Toronto, our premier was introducing her budget as I wrote this. Given that we live in a more or less bankrupt province, it is only mildly amusing that she reportedly found money to pay for infertile couples’ IVF procedures. Well, she didn’t quite “find” money, she decided to spend money that we don’t actually have. Her objective is to help those prospective parents who are unwilling to pay for IVF procedures themselves, but who seem wealthy enough to cough up the cash to raise children. Good going. We also learned this week, courtesy of the Supreme Court of Canada, that Prime Minister Stephen Harper and his friends in federal government seem to have only a very limited understanding of our constitutional arrangements, because they were yet again told off by the court.
Plenty to write a weekly column about, you might think. And yet, there are actually bigger fish to fry.The World Health Organization reported this week, in a disturbing document, the state of antimicrobial resistance across the world. We all have heard on and off about problems with the state of antibiotics research and development. A “race” was reportedly taking place. We were barely “ahead” of those nasty bugs. Typically, these problems seem to occur in faraway places like India and sub-Saharan Africa where tuberculosis is reportedly making a big comeback. Now comes the World Health Organization, telling us that the end is nigh. Well, not quite like that, but let this statement from the report’s foreword sink in for a moment: “Increasingly, governments around the world are beginning to pay attention to a problem so serious that it threatens the achievements of modern medicine. A post-antibiotic era — in which common infections and minor injuries can kill — far from being an apocalyptic fantasy, is instead a very real possibility for the 21st century.” The signs are that we are losing the race, and it actually is a real race to stay ahead of bacteria that would — in the absence of antibiotics — kill us in very large numbers. Not just the poor in faraway places.
The World Health Organization report notes that multi-drug-resistant tuberculosis is probably significantly underreported, thereby undermining control efforts. It also warns that antibiotics-resistant bacteria causing common infections such as those of the urinary tract and pneumonia are becoming increasingly common across the world, not just in the tropics. You will be pleased to learn that just when the world is warming up and malaria-carrying mosquitoes are spreading into areas where they have not been seen before, artemisinin, the main component used to treat malaria sufferers, is not working well any longer in a number of countries. If the mosquitoes carrying the drug-resistant infection spread into other countries due to the changing climate, the malaria-related death toll could quickly rise. Even HIV drugs aren’t what they once were. At least one drug (of a limited number available) is failing between 10% to 17% of newly infected people because the virus has successfully developed resistance to that particular drug. Seemingly, like everything, even the things killing us evolve to get stronger and survive. The cost of treating people who have developed antimicrobial resistance to a whole host of bacteria, viruses, parasites and fungi is increasing rapidly. The side-effects of ever more complex treatment regimes mounted to preserve their lives are frequently significant. Resistance to anti-flu drugs is also increasing. This is a by and large unnecessary development, given that we could simply get vaccinated and so keep the number of flu infections down.
The really big problem, though, is antibacterial resistance and the lack of new treatments in our research and development pipeline. While the situation on the HIV frontiers might not be great, it thankfully takes a lot more effort to transmit HIV than it does to transmit tuberculosis or gonorrhea, for instance.
Talking about transmission, tuberculosis is fairly easily transmissible. You can pick it up without doing much about it, not much different from picking up the flu virus. You talk to someone with an active infection and that person might sneeze or cough, and voila, the odds aren’t terrible that you will become infected. Going forward, we will probably see more life-threatening illnesses that are easily transmissible and cannot be effectively treated any longer. The question arises how we should try to contain the spread of such illnesses.
We know already that many people who are aware of their infection and who understand that they carry an easily transmissible virus, tend to drag themselves into workplaces. More often than not, they aim to show that delivering at work while sick shows how professional they really are. The company comes first. Well, in the process, they pass their bug on to many other people who do the same, eventually a very large number of people are sick, some will die of an entirely avoidable infection. We are pretty good at being irresponsible in relation to our fellow citizens, especially when it comes to these sorts of infectious illnesses. Given that in the foreseeable future we will not be able to treat an increasing number of easily transmissible infections efficiently, if at all, I wonder whether it is time to begin a new conversation about our rules of conduct toward each other. Should we compel people with such infections to check into specialized facilities where they will be isolated and well cared for? It seems to me that would be a small price to pay to protect our public health. That is, assuming such a strategy could achieve its objective and prevent a significant number of new infections.
Udo Schuklenk teaches bioethics at Queen’s University, he tweets @schuklenk.