Two-year-old euthanised in Netherlands in first assisted dying case of its kind

[IwantToRetire]

I'm not going to select any part of the article but just post the link for those who want to read
https://www.mirror.co.uk/news/world-news/netherlands-infant-2-euthanised-assisted-37709218

But there is one significant difference - we don’t have anything like the same powers of alleviation in the veterinary world. Euthanasia is the only real end of life care we can offer our pets. For both practical and financial reasons, you can’t send them home with a syringe driver or admit them to a hospice to be cared for by specialist palliative nurses around the clock. I know sometimes this system fails humans, but for pets it’s not even an option.

"keeping people alive when they're going to suffer horribly"

what's your threshold for suffering tho? this is why it's so hard. DS was ventilated at birth, filled with lines to keep him alive, ressused twice, fed via tubes until after an op at 2 weeks old, more weeks in hospital on high flow O2 and tube feeds. Is that too much suffering to have a now 11 yo who is doing well? or is it justified because we knows the outcome?

if a baby is born alive, then isn't it right to take reasonable steps to help them? and it's not just about gestation. plenty of parents have been refused help when their baby has been born because of a genetic issue.

"rather than making it easier to decide that death is the answer to the suffering around them."

When death is inevitably happening within a matter of weeks/days, no matter what interventions are attempted, it's not clear why prolonging the suffering is preferable and that it should be forced upon someone.

This is an important point, but it's also worth pointing out that quality of life [self-assessed by a mentally competent person] is about more than pain.
Its important to say that because the anti-choice side often quote good hospice care [which everyone supports] and pain control as an argument against the need for assisted dying.

There are uncontrollable symptoms other than pain which, after decades of suffering, can make life unbearable to a mentally competent person, especially when combined with other conditions which worsen with age.

A person who is not terminally ill may reach a point after decades of endurance of suffering from an accumulation of conditions, and facing failing general health, where they say
'Enough. I can't go on. I've fought the good fight and made the best of my life. No more endurance left.'

Hospice care, when they may in fact stay alive for a long time, and pain control, when pain is not the deciding factor, are not useful or relevant to people in this situation.

@Error404FucksNotFound “make it easier to care for people with profound disabilities, rather than making it easier to decide that death is the answer to the suffering around them.”

There are some things that are worse than death. Extreme suffering is one of them.

or is it justified because we knows the outcome?

This is a really good point. We feel that keeping tiny babies alive and intervening when they are sadly very ill even after treatment was a mistake, that we shouldn’t have made that choice. But no one has a time machine, we cannot possibly know in the point of emergency which babies will die eventually, and which will survive and live their lives. And sometimes that treatment and intervention will take months or years, and may be pretty gruelling in places - yes. But if you ask those people if it was worth it you’ll find some (many? A portion? I don’t know) will say yes.

We can’t ethically refuse to treat all babies at a certain age/presentation because sometimes the outcome will be awful.

In much older people, I broadly agree. But death is never inevitable, however likely - and for children and younger/middle-aged people I think that’s the point.

If people can genuinely make the decision for themselves then I support that all the way. But making decisions about inevitability for others is a very slippery slope - the extreme outliers shouldn’t be caught up in assumptions.

Of course death can be inevitable for some children.

Because what is applied to children often gets expanded to women in our patriarchal society. Coercion into assisted dying as well as husbands or sons or mostly male doctors deciding to euthanise a vulnerable woman without consent is a real concern. It has already happened in Canada- there is at least one documented case with concerns being raised by scientists about the existence of other cases.

am I being a cynic in supposing that it's posted here because this board is a political seclusion and supports a certain kind of approach to political debate and validation?

This is a really good point, and one which I admit I hadn't previously considered. Pain isn't the only factor.

However I stand by my previous point that inevitable death doesn't necessarily mean inevitable suffering. Even though pain medication sometimes isn't enough, its important I think to appreciate the nuance. Its not either/or - either excellent hospice care where you can have a happy and pain free end to your days, or a drawn out agonising death.

Its important to consider the multitude of experiences in the middle, and to legislate carefully (if only it were that easy!)

Death is inevitable for all of us so in that sense you’re right. But even with the conclusion that they will most likely die, there is much variation on when. And there are always outliers.

As a separate point I don't think we can equate prem babies with all their potential with existing children with a severe disability, or with terminally ill adults. These are all different groups.

Prematurity is not particularly rare. Even just considering extremely premature babies (born from 22-28 weeks, rather than all before 37 weeks), there were over 3000 born in the UK in 2022 alone. These would have all needed special care. But only 1 in 10 of these would have a severe disability.

Should we have left them all to die when the majority could be saved and go on to live a good life?

https://www.tommys.org/pregnancy-information/premature-birth/premature-birth-statistics

People nowadays seem afraid of death and often don’t like talking about it.

People in the past experienced death much more frequently in their daily lives. People died at home surrounded by relatives rather than in hospital environments, making the physical reality of dying and corpses a natural part of life.

Modern medicine has gone too far in some cases.

You're deluded here.

If you've got a toddler with advanced cancer for example, they've run out of options for treatment, and their measuring survival in weeks, for example.

Lets take the example of DIPG for example. Around 4,000 kids a year (worldwide) are diagnosed with it, and around 4,000 kids die from it, because it's considered terminal on diagnosis. And yes there are outliers. One single outlier.

You've got a much higher chance of surviving rabies than this disease, and rabies is considered 'invariably fatal'.

It's also often pretty obvious whether your child is likely to be the one in a million outlier or not. I don't think anyone suggesting euthanasia on diagnosis for even inevitably terminal conditions, but at a point where the end is in sight and continued survival is torture.

If there is some clinical trial that offers hope, it's not going to be offered to the ones so ill their bodies wouldn't be able to cope with the treatment. There comes a time where death is an inevitability within a relatively short period of time.

I’ll just shelve my clinical experience…

@MarieDeGournay really excellent post. I can think of one or two long term conditions which might become too much to bear after decades ... which ones were you thinking of?

I don’t think modern medicine has gone too far, I think it hasn’t gone far enough yet.

It always starts with life saving and then it develops quality of life improvements over later years. Do you know the last child Polio victim who needed an iron lung to breath just passed away? Martha Lillard contracted polio in 1953 at age 5. She then lived until age 78, passing away this past June.

Initially medicine meant these children had to stay in the iron lung all the time except for a few minutes here and there for hygiene and nappy changes.

Later, they had better medication so these now young adults only needed to sleep in them at night and so their lives started. Then they developed other better, smaller and portable ventilators and ways to wean some off needing them.

Too late for them did we get a vaccine. But isn’t it good we didn’t look at this girl at age 5 and think, hm better to euthanise her. It was the desire to give her a better life that inspired the medical innovations that did in fact give her a chance for a long and full life- she married twice and had pet dogs, she painted and made friends.

If we look at children in similar states where current medicine isn’t there yet- we can well write them off and say god that’s awful how can anyone, much less a child live like that?

I think it’s better to push to have medicine go further and increase quality of life rather than give up, shrug our shoulders and put them to sleep.

If all the children with polio had been euthanised because modern medicine had nothing better to offer, we would never have developed the kind of ventilators that saved the lives of thousands from other lung infections. Even when it looks hopeless, we can’t know what could be done for a child next year or a few years later.

The variation between 22 weeks and 27 weeks 6 days is so colossal that I can't imagine anyone genuinely thinks they should be considered in exactly the same way when it comes to viability decisions. And indeed they're not.

I agree when death is weeks away, but that would be considered shortening palliative care. This toddler wasn’t terminally ill or approaching death, so it was euthanasia.

Trying to avoid the question then.

Did you have clinical experience that makes the 100% fatal now survivable?

What you actually have to say about the illness I mentioned, for example?

What about CJD or other similar prion diseases with a 100% fatality rate. What would you say to parents with each child in the end stages of this?

If there are weeks away from death do you think this suddenly going to turn around heal?

Surely its unlikely for a 22 week foetus to survive?

There's a very big difference between a child in an iron lung who is otherwise compos mentis and not in pain, and a child with a severe extremely painful condition that can't be cured @NullaEffugium
"We might one day possibly find something to help" is cold comfort to someone in unending pain and discomfort. When you are in intense physical pain, subjectively the future doesnt exist. All that exists is there here and now, lurching from one moment to the next, in agony. If there is objectively medically no hope of surcease it is an extreme cruelty of the worst sort to force someone to keep living.

A 22 week infant cannot breathe, feed, or regulate their body temperature outside the womb without immediate, advanced life support.

My son was very premature with a very poor prognosis and his medical team and DH and I very much had conversations about the level of intervention we should offer and we’re all in agreement that if he could have a good quality of life then we should try, if not we’d let him die peacefully. There was no pressure and the decision intimately sat with us as his parents.

He’s an adult now, and absolutely fine but the stress of that situation gave me PTSD and I was ill for a long time. It’s cruel to imagine that anyone, a parent especially, is making these decisions on a whim.

I don’t believe in life at any cost. Some people are kept alive long after it is the right thing to do. Some people have disabilities that are unimaginably awful and would be better off dead.

This isn’t a feminist issue. It’s a human issue.