Sunday, March 05, 2006

Rockaby baby..

In the next few weeks, my country will become the first to allow the euthanasia of young children with incurable illness. A committee will be formed to decide when "baby euthanasia" is warranted.

The clinical director of pediatrics at the University Medical Centre in Groningen, has admitted participating in four "assisted neo-natal terminations." He has drawn up a protocol that has been adopted by the government, saying euthanasia can be considered only in cases with "unbearable suffering," with parental consent and consultation with other doctors.
"If a child is untreatably ill there can be horrendous suffering that makes the last few days or weeks of this child's life unbearable,"

Now the question is: are you going to leave the child like that or are you going to prevent the child from suffering?

27 comments:

Granny said...

Oh Dimitri, what a question for a quiet Sunday morning.

It's different where you live. I support the right to control our own lives, including the ending, as well as doing what is in a suffering infant's best interests. That is, I support it in The Netherlands.

I'm terribly afraid here that without very carefully written law, it will become an excuse. Oregon's law, written for adults, seems to be working well so it may be possible.

Getting much too long for a comment but I worry that hospitals here are already putting financial gain ahead of parents' wishes (Texas is a good example - law signed when Bush was governor). Parents could (and have been) pressured into decisions they were not ready to make.

I support the principle; I'm frightened of its application here.

DA said...

I am sorry for this question Ann. I am. Thank you for answering on a Sunday morning though..

I am very much troubled by my own thoughts. When rape, I could vote FOR but then again I think we should never terminate human life ourselves.

To be honest, this is out of my league.. But that would be too easy..

It would be somewhat strange to ask for opinions without giving my own. I think my compassion for life prevails.

Thank you for your thoughts Granny..

Worried said...

It is a most difficult subject and a difficult decision.

I support life, too, Dimitri. I also support death.

I have worked in the medical profession for most of my adult life and I have seen too much pain, too much suffering, too much blood, and nature-gone-wrong, too much of man's inhumanity to man, too much grief and despair.

When there is the faintest glimmer of hope for meaningful life, I support fighting death with every means available. Often if we can manage to keep the body functioning until it recovers from the shock and insult to it, the person that body holds can be brought to a life with quality of meaning. In those situations I have fervently, passionately wished that death was a physical entity I could grapple with, could seize it with my hands and drive it away. Is it irrational to wish that you could kill death? I have wished that when fighting desperately for the life of a patient. To me, death was then an enemy and I hated it.

But I have also seen times when death has come as a friend, when it brought an end to unbearable suffering and/or an unspeakable condition. Those times I wished for, prayed for death to come quickly, to not tarry for days or weeks, but to be merciful and come quickly. My personal values as well as the law forbade me to assist death but often as I stood over a patient I wished there was some way to help them. You feel so helpless, so impotent when medical science has failed and you must just watch as a brother human endures untold suffering. How can we know when they cannot speak for themselves? I believe there should be some way to allow these brothers to pass in peace. In cases of terminal adults who are mentally competent, I support their right to choose --when there is no hope for recovery and medical science cannot relieve their suffering.

In the case of infants or children, that is something that should be judged on a case by case basis, not on the parents' needs but on the child's needs. Several years ago there was a case in Florda of an anacephalic baby - no brain except the brain stem that governed the autonomic nervous sytem. It breathed, its heart beat, but there was no thinking part of the brain present. The physicians recommended and the parents finally agreed to allow termination. Well meaning but misguided right-to-lifers sued to prevent termination, stating that no one could determine the "quality of life" the baby would experience if kept alive. I wished those people could have cared for the baby for one week and then made a more informed decision.

I've been here, done that. I have a grand daughter who was born with a small coronary defect readily repairable by modern surgical miracles. Unfortunately, the surgery went well but complications upon complications left her blind, almost deaf, profoundly retarded, unable to even sit alone. Thanks to excellent care she is now almost 20 years old, longer than her petite mother is tall, must be diapered and fed like an infant, lifted and carried and held as such, strapped in her wheelchair with a harness. She has never spoken a word of language but she cries and sometimes literally shrieks, tossing her head from side to side with an agonized expression on her face. So we know she feels pain but we are at a total loss to determine the source of her pain, and so are the doctors. Is she in there? Is the person she was meant to be inside that helpless, pain wracked body? Does she have any quality of life? In her dark, silent, helpless, world is there a spark of awareness? Have we been kind to labor so hard to ensure her physical health and well being to subject her to surgery after surgery, to painful treatments? To allow her to endure whatever it is that makes her scream and shriek in pain? Or would it have been kinder, more merciful, more loving to let her go?

I've been there, done that.

Worried said...

That was a thought provoking question, Dimitri. A question that needs be pondered upon deeply and not one to be answered by emotion or snap jusgements. It is a question which will undoubtedly be presented to the American public one day. The natural emotional response regarding children is an immediate urge to protect; it goes against all our nature to "kill" a child. And yet, in some cases termination is the greater love, the greater protection.

The case Granny mentioned was a baby born with severe genetic defects and was unable to survive without continuous life support. If it could have lived long term, it would have had to remain on life support in hospital for all of its days. The parents pressured against their will? The mother (no father around) was of unstable mind who insisted the baby was a holy being ( i don't recall if he

was supposed to be Jesus or who) and that he would be fine and perfect if they'd just keep him alive long enough.

Financial gain? The hospital had already absorbed the loss of close to a million dollars out of consideration for the mother's feelings, even though they knew it was an utterly hopeless case. She was poor, had no money and no insurance and therefore no way to privately pay for continued life support indefinitely. It was a very sad case and received a lot of pro and con publicity.

Texas Children's Hospital absorbs millions of dollars in losses as well as Texas tax dollars go to treat poor children with terrible ailments and birth defects that CAN BE HELPED and survive to live a fair quality of life. I know. I saw plenty of them, talked to plenty of poor parents all the many times and months we were at the hospital with our Betty.

Too long for a comment? You asked. I told. I am often too verbose but you did indeed get my opinion.

Granny said...

WA was closer to that example than I. It came to the forefront of the news at the same time as the Terry Schiavo case. She is probably right in that instance and I had read some of the same reports about the family. It seemed to me that Bush was saying one thing in Texas and another in Washington, both for political gain. My reaction may have been a kneejerk reaction against Bush (and a one size fits all law) as much as anything.

Been there done that as has Worried American. I don't talk much about my oldest son who is now 48. He was deprived of oxygen at birth for much too long by well meaning people. The result was severe mental retardation and cerebral palsy. He's been institutionalized since he was too big for me to handle by myself with two other children.

I think his life is happy. He can do simple things. Certainly, it's not as great a tragedy as Worried American's granddaughter and I don't wish for his life to end.

I do wonder about the beginning of his life though and about the decision to keep trying for survival when they knew that severe brain damage would result.

No matter which way we look at it, it's a tragedy for someone. I have a great compassion for life; I also think quality of life can be an important part of any decision and great care needs to be taken that any decision is in the best interests of the child who cannot decide for himself.

That's vague I know but I could have an opinion about one case and turn around and have the opposite opinion about another. In the end, my opinion doesn't matter or shouldn't unless it's my family involved.

We should always be able to talk about subjects like this.

Tina said...

I know I have only been a mom for 3 yrs, but the single most torturous thing for any parent is watching their child suffer. Whether it be w/a high fever and flu or a serious illness, it is simply unbearable. You want to take away all of their pain and suffering and take it on physically yourself. I know BabyGirl is facing surgery in the next few wks, and hopefully all will go well with this, but if she were incurably sick and in pain, my husband and I would do anything... ANYTHING on earth we could do stop her from suffering. A child in pain is something that should be relieved, and if their illness is so severe that the suffering is unbearable and quality of life is nil, then I believe I would support ending that pain.

Andie D. said...

Wow. What a topic.

My husband and I have discussed the fact that were either of us in a place where there were a choice to "pull the plug", we would want that damned plug pulled. Neither of us wants to suffer, or risk extending our lives in a vegitative state.

But if it were our child, would we go the same route? I'd like to think so. I'd like to think that I'd do whatever it took to prevent my child from suffering unnesessarily. And if that meant humanely ending his or her life, then I'd do it. In a heartbeat.

Progressive Traditionalist said...

This is a difficult question.
I believe for me that I could choose to end life past a certain point. But I would not want to make that decision for others. At the same time, I would not want to restrain someone from making those difficult decisions, provided proper protections were put in place. Certainly not as an arbitrary thing. It's good that the doctors are involved with this to set ethical standards.

Lesley said...

I can only judge by how I would want things done and if I were suffering terribly, with no hope of getting better, especially if were brain dead, then I would want it ended. Still, I feel so sorry for any parent who would have to make such a choice. I would never want to make that choice for someone else.

Lorraine said...

Oh to be so wise, so knowing and so loving as to know what to do...
God knows better, but still I would defy Him with all my love, for I would not let my baby suffer.

Worried said...

Ah Dimitri, you are a one for posing questions, aren't you? That is good, young man; it opens up discussions and gives people the opportunity to really think on a subject. I believe we get so caught up in the busy-ness of life that we become lax about deep thought; we just react.
Some subjects are very painful, very distressing and evoke emotional responses. The important thing is that we THINK about them. Parents who opt for euthanasia should never be condemned or criticized. Only those individuals who have experienced the mental and emotional agony of living with a precious, beloved child who suffers can relate to such a terrible decision. As Tina says, you find a child's suffering unbearable and we wish we could take that pain ourselves, but we cannot. IF it is the consensus of the medical community that there is no hope, a parent should have the option of allowing their child a peace that is otherwise unobtainable.
There is too damned much pain and suffering in this world, without forcing it upon our most helpless and vulnerable brothers.

Gary said...

I support the right to die with dignity for adults who choose this and I admire the Netherlands for exploring the boundaries beyond that, because I know it's been done with great care and an ethical approach.

Hmmm. I can only imagine how it would feel to be the parent of a child that is in great suffering with no hope of recovery. It would be the toughest thing to face.

As Granny notes, it's worth watching the classism behind any medical policy also - meaning poor people and the disenfranchised are often the ones who do the bulk of suffering and dying in some places (such as executions in the US). I learned recently that there is a great increase in elderly suicide in the US in the past 10 years. Research is pointing to people choosing to die because of the burden of health care costs on their partners or children.

Guess I'm off track now..

DA said...

I am touched by all of your personal responses my virtual friends. Thank you for sharing. Obviously there again seem to be two sides of the coin here.

Killing death would indeed be a waste of energy I guess Worried. But killing pain is what I read in other comments as well. I am sorry to hear about your grand daughter. I only she could express her feelings..

The lady you described in the examples had the worst of everything happening to her I guess.

It is too sad that politicions many times take advantage of these situations to get media exposure again Granny. Your son had a false start in life Ann. It is must be a blessing to see that he is happy though. Not only for himself but also for parents in general.

Being a parent is the most special thing in my life too Tina. I know exactly what you mean when a child is acheing. I hope the surgery goes well. You know; there are so many skilled doctors out there.

The other day I read something about a guy awakening from a coma after twenty years. Miracles do happen Andie. But there must be something of a personal maximum with everyone..

I agree PT, point is that we, nor doctors oversee the big picture. The bigger picture I mean. We know so little and our ethical standards are just a mere reflection of our humble capacities as human beings..

That must be the most extreme thing to do in your life Lesley. Let's just hope we will be spared of that..

If only we we could see the bigger picture Lorraine..

I couldn't have said that more beautiful WA. Amen.

You're never off track here Gary. That's extremely distubing news about elderly suicides. It makes me feel so tremendously ashamed that billions are spent on arms while our senior citizens aren't able to pay for medicare..

Kathleen Callon said...

This is tough...have to think about it before commenting...

Fouad said...

What a difficult issue this is Dimitri... I don't quite know where I stand ethically on the issue, but faced with such a situation, as a physician, I can pull the plug on someone who's terminally ill and who's dependent on life support to survive. I can also administer high doses of narcotics to alleviate the pain. But I just can't knowingly administer a fatal dose of a medication, as in active euthanasia. I don't know whether it makes ethical or common sense, I just can't do it. But I won't stand in the way of those who can, unless I have a very good reason to do it.

Ammey Kesarkar said...

Since decades Euthanasia has already been in practice all over the world illegally. And I strongly disagree and vote against Euthanasia
Are ‘we’ running away from something?

Dimitri and all my virtual friends do make a point to visit this link
http://zoes-place.org.uk/

Yes, I know this is NOT enough and maybe there are lots of ‘strings’ attached.
Yet, it does make a difference…

Lindsay Lobe said...

Hi DA

I have a number of Doctor Friends and their consensus is they all decline active participation in euthanasia.

But where there is suffering in a terminal illness the question can be asked, to what extent we can alleviate that suffering?

Answer

I can administer a drug in sufficient dosage to reduce the suffering from which you may or may not wake up afterwards. I will treat the suffering firstly and the dose to the highest point neceasary to alleviate that suffering which is on the very edge of what is considered a safe dosage.

I expect you to wake up afterwards but I can’t be sure.

So the question can be asked of the patient or his or her next of kin if the patient is unable to respond.

Are You comfortable with me taking that agressive stance on suffering.?
Are You comfortable with the stuation that you may not wake up afterwards ?

Palliative care funding needs to be increased in many countries.

In fact what the Dutch Government is proposing to formalize is what is already happening in many hospital throughout the world.

arulba said...

Wow! It's so hard to know what you would do unless in the shoes of the person making a decision. But what a decision to have to make!

I've always believed abortion is wrong because I don't believe in intefering with nature and think I could probably live with the consequences - even if raped. But I also don't believe I have the right to make that decision for anyone but myself so would never vote to pass a law against abortion. You can't stand in other people's shoes and know how it is for them. And it's also difficult to know how you would react if placed in the same situation unless you have been in it.

I guess I would take a similar stand on Euthenasia. I don't really think we should be taking the lives of others. But the fact that we are able to maintain lives through technology kind of warps the whole argument of "natural life" or "natural death". It's this "unnatural" ability to prolong lives that often extends suffering, too.

I think most people would make the decision to end their child's life out of love rather than fear and they should be allowed to make that decision. Oh, but what a tough one to have to make! My heart breaks thinking about it.

SCRIBBLEZ TO WAKEUP said...

Hey..Interesting topic..I think I would personally support "euthanasia". It's more criminal to let someone bear the brunt. It makes more sense to let go of the misery and pain.

Blogger formerly known as JBlue said...

I hadn't heard about this, so thanks for telling us. I guess I agree most with PT in that I support everyone's right to make this choice for himself or herself, but to make the choice for another human being.... I can't think of anything more difficult, especially for a child who cannot speak. We can't know for certain what that child would want. There are no easy answers here.

Not too long ago, doctors believed infants didn't feel pain, so they operated on them without anesthesia. Doctors do not know everything, unfortunately. Even the best ones.

NicoleW said...

Hi, a nice blog you have here... You will surely get an bookmark :) Fleshlight

Blog Monkey said...

free of religion and all it's binding, i would say... better to end one's suffering than keep them alive by ways of guilt or greed.

the precious little packets. it weighs heavy on the heart, but it is better than to leave them with a lifetime of tribulation, pain or uncertainty. however, care needs to be taken to evaluate the worthiness of the parent's ability to make said decision.

plently more children are brought into theis world to suffer in innumerable ways due to lack of parental foresight, planning or ability. perhaps it is there we should first place emphasis. the story ends not at the crib.

Lenren said...

I am very upset about this. I do not want children to suffer either, but coming from someone who has lost a son I would/did want them to do eveything possible to help him. Or make him comfortable. I think its terrible when a sick child is suffering but I always thought they could make them comfortable. I don't know, what are hard subject.It does seem like there could be loop holes people might take advantage of.Wow. This post made me cry. I am not sure what else to say. Sorry this is so long. I can't wait to hear back from you. Take care and have a good weekend. Amber

Nerdine said...

It's a difficult topic you've posted on, Dimitri. A thoughtprovoking one - which is good!
A law like this needs careful consideration. Who is to decide what child dies and what child gets to live? Who can say a miracle isn't going to happen? They CAN happen - even if the child is terminally ill and suffers.
I am personally against taking lives in any form - even to ease suffering. But I also believe I'm not the one to decide for others. How can I make a decision for someone else?
And yet out of compassion I am tempted to agree to such a law.
Many conflicting thoughts here...

DA said...

I was abroad again, sorry for my belayed reaction friends..

Very difficult Kathleen and Fouad.

What a great link Ammey, "gift of life" Must be very hard but rewarding working there.

I agree Lindsay that it is happening illegally and many doctors are sued for it. That's in fact why it is legalized over here too. To protect doctors..

It is heartbraking Arulba. Decide out of love in stead of fear is a good one.

Thx for visiting Scribblez.

Babies don't feel pain? I wonder how they determined that Julian.

Hi Necolew.

Story doen't end at the crib Monkey, that's where it starts indeed.

We have the same thoughts Amber..

Conflicts of thought needs some serious meditation my Buddhist friend Guro:-)

I wish you all a wonderfull happy weekend!

Anonymous said...

coooooool man

Elizabeth Green said...

I support this law in the right circumstances. In my job, the hardest thing for me to do is sign a baby onto hospice, and it does happen. If it were me, and I knew my child would have no quality of life, for instance, if there was severe brain damage, extreme retardation (not Down's Syndrome) or profound birth defects, I could support a doctor giving the baby some gentle anesthesia and letting him/her go quietly. As hard as it would be, I think you have to think of the child's best interest & not your own. If I had one of those issues, I'd want the choice to go.