See Infra

Digging at the confluence of culture and everything else

Tag Archives: parenthood

Best Interests

A friend linked me to the Judgement of the court in the Alife Evans case. It is an extraordinary piece of writing and done with diligent care. You should read it. For those of you not aware, Alife Evans was a terminally ill toddler, now passed, whose parents wanted to keep him on life support and transported to a Roman hospital for further last ditch treatment. The case is difficult and has affected people profoundly, because at the heart of it lies the key question about how we value life in the face of choice and choice in the face of death.

To many of us, it seems like the question should be simple: if he’s going to die anyway and someone is willing to pay for it, why not just let the parent’s try? What is the cost? Dignity? Alfie’s Guardian ad litem “stated that in her view Alfieā€™s life now lacks dignity and his best interests can only be met by withdrawing ventilation.” (Paragraph 54). Dignity is a bugaboo that stands in more for the discomfort of the viewer than the suffering of the patient. And so Justice Hayden dispatched that easily. He visited Alfie’s room and seeing him surrounded by loving relatives, gifts from supporters, and dedicated medical professionals found that Alfie lied in “an environment which inherently conveys dignity to Alfie himself. In my judgment his life has true dignity” (Paragraph 56). So no, not dignity.

Yet there was perhaps, a real and horrifying cost. In paragraph 45 Justice Hayden discusses a note given to medical experts by Dr. Hubner claiming that Alfie Evans could be transported to the hospital in Rome. It turns out Dr. Hubner lied to get into the hospital, lied about having read the evidence, and prescribed a treatment plan that was contraindicated by Alfie’s medical history. Justice Hayden was unimpressed:

“I am at a loss to know quite why Dr Hubner fell so far below the standards expected of his profession. I am constrained to say that he has failed the parents, the Court but most importantly, Alfie. Mr Mylonas makes the point that he seemed not to recognise the extent and significance of his shortcomings in his evidence. I agree.”

This is the immediate and real cost of continuing treatment for Alfie Evans that many people, myself included, could not see. A seizure while flying in the hands of incompetent medical care, a painful end, inflicted on a child and those he loves in transit to his last hope.

But Justice Hayden did not rely simply on that, and neither shall we. For this is an argument about what the best interests of a child are and who gets to decide that. Hayden relied in part on guidance from The Royal College of Paediatrics and Child Health quoted in paragraph 46. I have excerpted the salient bits here:

II When life is limited in quality […] the severity of the child’s condition is such that it is difficult or impossible for them to […] enjoy the benefits that continued life brings. […] Even in the absence of demonstrable pain or suffering, continuation of LST may not be in their best interests because it cannot provide overall benefit to them. […] It is important, here as elsewhere, that due account of parental views wishes and preferences is taken and due regard given to the acute clinical situation in the context of the child’s overall situation.

And here we find the crux of the problem. The conflation of best interests with quality of life. Not only quality of life, but the notion you have to prove some positive amount of quality of life, not merely the absence of a threat to it. Quality of life is a tricky thing and we see wildly different understandings of quality of life in children and adults and we should value them all. And one of the ways we do this is by allowing parents to raise their children to seek a high quality life as they understand it. It is a core values question and not one we can ever outsource to professionals, medical or otherwise. So long as the law demands that we assume that the best interests of a child are to expire rather than risk treatment. Justice Hayden made the correct judgement. But the law is wrong to do so. We – as a society and mediated through our laws – allow adults to cling to life, even futilely, even if we think they would be better going gently into the night. We do not dictate when their life is insufficiently qualified to be considered worth living, they do. We do force people to prove an upside to them being alive a bit longer. We should encourage each other to ask these questions – I know I do not want to be the sort who lives just for the sake of not being dead. But that question is the province of the individual.

With a child we let parents make these decisions for them until there is compelling reason to snatch their children away from them. Some point that the parent loses the wide presumption that they stand in for their children’s truest desires and interests. And here we come to the hidden, and most compelling possibility – that Alife’s choice might be to die. Not because his life was not worth living, not just because he might feel pain – but because he loves his parents and wishes to let them move onto healing. And it is a terrifying, unvoiced thought. I do not know if that is what lies behind Hayden’s fears of Alife dying in flight, or continuing on in futility but it would make sense. A vegetative boy cannot be hurt by false hope, but his interests in his family can be. I think Alfie’s parents should have been given deference on this question, but I take comfort in the idea that their son, had he grown to a man, would have been the sort of man who would have let go of his life for his family.

To truly trust in human life is to trust the choices of the beings that live. For choice to be truly meaningful, it must be something other than merely not being dead a moment longer and it also must be something more than living someone else’s understanding of a good life. Sometimes, it means trusting that our children might be better people that we selfishly wish them to be.


An Ambivilence for Father’s Day

I have trouble with Father’s Day. I mean, I shouldn’t. I’m part of three traditions that all honor parents in their own peculiar ways. I don’t really buy it anyway. Why are we honoring people for doing what they’re supposed to do? No one’s ever offered me an award for not beating my wife, nor for not stealing from the office, nor for not irresponsibly fathering and abandoning children. No one should. It is a basic obligation.

Parenthood is an obligation first and finally. No child is brought into the world due to their consent. Not one of us is alive because asked to be born, none of us consented to enter the lottery that determines our circumstances. Our lives begin in pain and terror. The cry of a helpless baby is not merely a request, it is a demand. Feed me! This is your fault! That fault is born by mother and father, and gender roles are accidents of history and efficiency in meeting that obligation.

That is a moral obligation, not a biological one. To end a pregnancy may require special intervention for a mother, but upon birth the instinctive bonds and hormonal imperatives are just one of many: food, safety, shelter, companionship. The demands of a child have only the power of shrill voices: blackmail of the heart, not of genetics. There will always be the chance to have another. Fathers can walk away long before the cries, before the belly’s swell, long before his biology begins to ask him to stay.

Sometimes, often even, morality isn’t enough to make fathers stay. The gratitude that we feel – that I feel – towards our own fathers and fathers worldwide does not come from them exceeding their basic moral responsibilities. It comes from a recognition that in the world-that-is fathers fail their moral responsibilities all the time. So we honor the better fathers in the world-that-is because the world-that-is is so far from the world-that-ought. If giving out cookies is the price we pay for less of that, then, well, that’s what we’re going to have to do.

My father never needed that cookie and never asked for it. No one takes his obligations with the same seriousness that my father does. I don’t know that he has done them well, but by God, he has done them. In a world of muddling through, my father never threw up his hands and asked for sympathy, no excuses for his fallibility. When he did wrong, it was because he thought he was right and when he learned otherwise, he tried to make amends. I learn more every day how extraordinary that really is, even if I now think (in imitation of him) that it is the very least that people should do.

Fathers and sons have complex relationships. It is truth not because it is written in the bedrock of humanity (genetic, spiritual or memetic) but because it has emerged again and again across time and space. We’re no exception. As a child I gave up on asking for affection and set my eyes on a higher prize, that of his respect. That’s driven me since in more ways that I’d care to admit, but I think ultimately for the better. We agree on nothing. Verily, we are disagreeable and that could not annoy the other more. He looks at me and he sees all his fears. I once looked at him and I saw mine. Now, I hope I finally see him clearly, a man who never shirks and never expects forbearance or praise or gratitude for simply doing his job. In the world-that-ought, it’d be the least. That makes it worth all the more in the world-that-is.

In this world of failures and excuses, he’s a specially great father indeed.