Choosing Life on a Ventilator - Is it selfish?

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deanarrca

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This morning I received a comment on my blog about how selfish it was for my sil to have chosen to put my nephew on a ventilator.I have often wondered what I would have done in my sil in law’s shoes. Would I have let nature taken it’s course or not. I also know there are different viewpoints and every situation is different. However, when given all the true facts I just don’t get selfish?

Anyway on my blog I wanted to explore this issue:
Quality of Life Issues: Life on a Ventilator does not mean a painful or poorer quality of life.
Quality of Life Issues: Choosing Life on a Ventilator, Is it Selfish? Is It Giving Others False-Hope? What do you think?

I know kinda a shameless plug to drive some traffic to my blog- But these types of ethical questions interest me. Also I think because of the fact they hit so close to home.

My nephew Samuel was born with a condition called Thanatophoric Dysplasia which is a condition that is considered incompatible with life. My Sister-in-law and brother-in-law went against Doctors wishes and did not have a therapeutic abortion. They also went against Dr’s wishes and had him put on a ventilator. He is now 4 and although he lives life on a ventilator is a happy bubbly child doing all kinds of things the Dr’s said he would never be able to do.
 
In my opinion, having the abortion in order to not have to worry about a sick child would be selfish. Keeping a loved child alive, this is love not selfishness. Again, just my opinion.
 
deanarrca said:
This morning I received a comment on my blog about how selfish it was for my sil to have chosen to put my nephew on a ventilator.I have often wondered what I would have done in my sil in law’s shoes. Would I have let nature taken it’s course or not. I also know there are different viewpoints and every situation is different. However, when given all the true facts I just don’t get selfish?..My nephew Samuel was born with a condition called Thanatophoric Dysplasia which is a condition that is considered incompatible with life. My Sister-in-law and brother-in-law went against Doctors wishes and did not have a therapeutic abortion. They also went against Dr’s wishes and had him put on a ventilator. He is now 4 and although he lives life on a ventilator is a happy bubbly child doing all kinds of things the Dr’s said he would never be able to do.
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Woe! What a strange comment to call your SIL and BIL’s decision to choose life for their child “selfish.” A four year old, happy, bubbly, child lives! That may makes some people feel bad who push (or who had) “therapeutic abortions” and/or who push for euthanasia. How selfish of* those other people* to call your SIL selfish for not affirming their decision to destroy or withhold treatment from humans with disabilities.
 
I posted before reading the blog comment. I note that the person who made the comment had a child with the same syndrome and decided to “let him go.” (Whatever that means? It could mean a co-ersed abortion or child who died shortly after birth because the medical community said it would be “unselfish” and “for the best”.) Please use extreme charity in responding to this person!!! She (he?) believed those who said her child would never have any of the things that your nephew obviously has. Seeing your nephew’s smiling face likely brings up deep pains of what might have been for her child…
 
gardenswithkids said:
I posted before reading the blog comment. I note that the person who made the comment had a child with the same syndrome and decided to “let him go.” (Whatever that means? It could mean a co-ersed abortion or child who died shortly after birth because the medical community said it would be “unselfish” and “for the best”.) Please use extreme charity in responding to this person!!! She (he?) believed those who said her child would never have any of the things that your nephew obviously has. Seeing your nephew’s smiling face likely brings up deep pains of what might have been for her child…
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Yes I know- I feel like my response might have been a little harsh now re-reading it. I really pass no judgment- I probably should have come been more compassionate in my response. I know these families are told this by the Doctors. It was what my SIL was told. There is so much pressure on these families that have to make such tough decisions. I was a special ed teacher for many years and also worked with spina-bifida and cerebral palsy and traumatic brain injured children, all who had an excellent quality of life. However, I know well meaning Dr’s and many who use the poor quality of life argument to scare young parents into making maybe not so well informed decisions. It is sad. I guess I want to get the message out that living on a ventilator is not as bad as they make it sound. We have come a tremendous way from the iron lungs of years ago.
 
I think each situation is very unique and should be treated as such…

Clearly, abortion is NEVER the answer, though.

In your nephew’s case, it’s clear that he is able to give and receive love through his life. Just like any other medical condition that requires constant intervention (think of diabetics requiring insulin, for example), in his case he’s able to LIVE thanks to that medical intervention.

However, I do see some cases toward the end of life when a do not resuscitate order is a loving decision - knowing that truly God is calling someone home…

But, like gardens said… the poster on your blog may not have been talking about abortion, nor may (s)he have known there truly were other options like your nephew has experienced. Definitely stay charitable in responses because I’m sure subjects like this are very emotionally charged and difficult for anyone who has experienced them. 😦
 
deanarrca said:
Yes I know- I feel like my response might have been a little harsh now re-reading it. I really pass no judgment- I probably should have come been more compassionate in my response. I know these families are told this by the Doctors. It was what my SIL was told. There is so much pressure on these families that have to make such tough decisions. I was a special ed teacher for many years and also worked with spina-bifida and cerebral palsy and traumatic brain injured children, all who had an excellent quality of life. However, I know well meaning Dr’s and many who use the poor quality of life argument to scare young parents into making maybe not so well informed decisions. It is sad. I guess I want to get the message out that living on a ventilator is not as bad as they make it sound. We have come a tremendous way from the iron lungs of years ago.
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I don’t think you were too harsh. My* own* first response before reading the full blog comment was–glad I didn’t post that comment on your blog! I knew that sometimes people who say or write these things do so because they have personally been through difficult situations and made other choices–and that was definately true for the person who made the comment about your SIL being “selfish”.

I wonder what that parent is going through now after learning about your nephew’s life on a ventilator? And what lead that person to find your blog on thanotorphic dysplasia in the first place? Did she (he?) simply stumble onto your blog or find it through a web search, looking for answers and trying sort through the past? Prayers for that person.
 
I agree that while there is hope you should pursue it. You should never take any action that deliberately removes hope.

However this does sound like a case where someone was deceived and is still in the denial stage. Your post has damaged the delusion they have been protecting themselves with.
 
God Bless all those who cherish & protect life, no matter how difficult!

The recent story of the man in a coma for 23 years who was fully aware of his surroundings, despite medical opinions that were wrong, reinforces the value of every human life.

Thank God he wasn’t starved to death like Terry Schiavo & so many others in the name of compassion!!

**Imagine being fully conscious, yet totally helpless & having people unhook your feeding tube causing you the agonizingly slow process of starving & dehydrating to death. That is selfishness & cruelty!!
**
What if a medical breakthrough in a year or 2 or 10 allows these people to live a semi-normal life? These same intellectual, “brights”, who only believe in science, would be the first to pull the plug in the name of “compassion” (they mean it’s easier & more convenient for them to follow their selfish plans without caring for someone who needs their help)…

Sancta Maria, Mater Dei, Ora Pro Nobis Peccatoribus!

mark
 
No, I would not call that selfish behavior. In fact, I would call that a very self sacrificing and loving act. Many parents would not want to deal with the difficulties and expenses that such a condition would entail, and it is all to easy to find an excuse to kill a child in our culture.
 
I don’t know.

Some people say they would rather die than live on a ventilator, other people prefer to live in any way possible as long as they live.

A child probably doesn’t have the capacity to understand the situation and decide either way.
 
I care for patients on ventilators and have seen miraculous things happen in my practice as a nurse. I don’t think placing a person on a ventilator is wrong. I do think that when doing so a person should be aware of what it entails. While a vent can keep someone breathing and prolong the dying process, it cannot keep alive a person who’s systems are failing. In the case of this child the vent has given him life rather than prolonging his death. This family has done a wonderful thing giving this child the best life possible. To have been able to sustain him as they have shows that they keep themselves informed and are deeply committed to him.

People on vents are very prone to pneumonia and to pressure ulcers. Even Christopher Reeve with the finest equipment and staff available to him could not avoid pressure ulcers. I understand an infected ulcer is what actually killed him. As this little boy grows there will be new problems to face but the parents’ obvious committment to him makes me believe he will do well and will be blessed and a blessing to many.

I will include him and his family in my prayers.
 
THese kinds of questions with babies are difficult. It is possible to take things to the point where you are taking away the dignity of life by trying to prolong it. But what is that point? What medicine can do is always changing. And each case is unique, in many cases it simply isn’t clear what the outcome of any course of action will be.

I think there are always some questions that we need to ask ourselves in such situations - what is the outcome of this likely to be in the short and long term? What are the consequences if things go as well as can be expected, and as poorly as can be expected?

And as Christians although we embrace hope and revere life, at the same time we do not fear death, it is not a horror to be avoided at any cost.

And of course when we are faced with these questions, we are often not prepared for them. We haven’t likely been boning up on our knowledge of the medical considerations and so must rely on experts. And it is difficult in such a situation to stand back from the emotions involved. Good advice from a spiritual adviser is probably among the most worthwhile things one can have, and hospital chaplains can be very good at this kind of support.
 
I am a nurse who has had the honor and privilege of caring for a young man who is a ventilator dependent quadraplegic. He was hit by a car when he was 7 yrs old, and is now 26. This young man is one of the most amazing persons I’ve ever met. He never complains, always has a smile, and touches and blesses everyone who encounters him. He finished elementary school, high school, and even went on to college where he earned a degree, being on the deans list. He has a great sense of humor, and is a wonderful prayer advocate. This man is deeply loved by his family, including young nieces and nephews. I become irritated when I hear people talk about “quality of life” issues, as I’ve unfortunately seen healthy children living in abusive situations who have less quality of life then him.
He is a blessing to all who know him, and an inspiration to many.
In my opinion, it would be far more selfish to deny me and others the joy of loving someone so very special.
 
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