end of life decisions


#1

Our infant son died 9 months ago after a significant struggle for his life which was unexpected. Starting about a week before his death, we were asked multiple times by medical staff what end result we were “comfortable” with, i.e. if we weren’t “comfortable” taking home a child with a feeding tube, apparently they wouldn’t place one. If we weren’t “comfortable” with him needing prolonged respiratory support, apparently we could make those decisions too.

We were firm that we would draw the line only at medically futile - that we would not prolong our son’s suffering once it became medically futile. Otherwise, we were “comfortable” with anything that had a reasonable chance of allowing our son to recover, even if he was left with residual, potentially long term complications. Our son was airlifted over 400 miles from our home, so we weren’t near our own parish priest, but met several times with the hospital priest and he assured us we were following the teachings of the church. We had our son baptised and confirmed.

The day our son died, they told us that they didn’t believe he would live through the night. We were strongly encouraged to take the opportunity to hold him before his death, although movement made him wildly unstable and we had not been able to do so previously. I resisted because I was worried about it making our child more unstable, but my husband and the hospital staff felt strongly that we be able to hold our son. He died within a few hours. As he was dying, we were asked by the staff and agreed at a point to remove his respirator, as we believed at that point it had become medically futile, and was only prolonging his considerable suffering.as his heartrate and bloodpressure were well below the level of being able to sustain and preserve functioning. We refused one prior request by the medical staff to do so, as this was not the case at the time.

That day was the worst of my life, and I now reflect on the decisions we made in all the turmoil of that day. Was it morally permissible to do something (hold him) if it had the end result of shortening his life? Even if death is expected, is it ever morally permissible to do something that may have the effect of shortening life, even if for good motives (not having our son died alone in his bed, giving him care and comfort in his final hours). I’m thinking it may not be. While it was highly likely, even expected, that our son would die, they could not guarantee it. How could we be sure we removed the respirator at the right time? What is the “right” time? I’m thinking specifically about end of life decisions for the elderly, it is not permissible to hasten the end of life, even if the intent is to relieve suffering (not the same situation, but similiar principles)

I have been told that “you made the best decision you could with the information you had”. And I believe that to be true. More than anything in the world, we wanted our son to live. But was it still objectively wrong - people make the wrong decisions for good motives all the time.


#2

Please stop beating yourself over this.

Yes, it is morally permissible to do the things you did. A respirator is considered extraordinary means and is never required. Yes, it can be removed at any time. Holding your son is not immoral either.

Please, please, please get grief counseling and speak to your parish priest.


#3

I did speak to our priest, he’s the one who told me “you did the best you could with the information you had”. He didn’t tell me we made the right or best or even good decision, which is why I wondered. He seemed to be measuring his words carefully. It would have made it easier for me if he told me it was.

I know holding our son was not immoral. My question was, it very likely hastened his death. THat is why we were not permitted to hold him prior to that point and time, because it made him unstable and was unsafe. Given that circumstance, it seems natural to wonder if it was the best choice. My question is, is it moral to do something (take an action) that will have the foreseen consequence of hastening a death? If I would have posted that question alone, would you have given a different answer?


#4

I don’t thinking asking the question is wrong. This has been a deep journey of faith for me, which has brought me considerabley closer to the Lorf. Seeking answers and further understanding should not be seen as wrong, or pathological.

Also, I did not know that about the respirators, many preemies have need of mechanical ventilation until their lungs mature, and I never realized that is considered extraordinary and could be pulled at any time regardless of the existance of any other medical issues. That makes sense with the elderly, however. I just didn’t realize it was regardless of age.


#5

Please accept my sympathy for your great loss.
Your grief and questions are natural.
You trusted your priest, the guide God has placed you under, to give you direction.
In your acceptance of his words, please trust that God accepts your humble obedience.
There is no way to answer those questions with certainty in your own mind, and these questions are part of your processing this awful loss.
I do not believe God finds fault with your choices, only that He has compassion on your sadness and loss.

Holding your son was a great gift of love to him.
It was a special parental gift of love that you gave him.
Your sorrow never to have held him would have been immeasurable, so holding him was also God’s gift to you.


#6

Yes. For example, one may give morphine for pain even if it may hasten death. From the Catechism:

2279 Even if death is thought imminent, the ordinary care owed to a sick person cannot be legitimately interrupted. The use of painkillers to alleviate the sufferings of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as either an end or a means, but only foreseen and tolerated as inevitable

Again, i really urge you to get counseling for your loss and stop beating yourself up and second guessing your actions. I think you are reading something in to what your priest said that he did not intend. Stop looking for hidden meaning, I don’t think there was any such intention on his part.


#7

[quote="etmom, post:4, topic:279365"]
I never realized that is considered extraordinary and could be pulled at any time regardless of the existance of any other medical issues. That makes sense with the elderly, however. I just didn't realize it was regardless of age.

[/quote]

That is not at all what I said. I am sorry if you misinterpreted. I was referring to **your **situation, in which death was inevitable and the respirator was merely mechanically prolonging life.

From the Catechism:
2278 Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or **disproportionate to the expected outcome **can be legitimate

In this new scenario you provide, a preemie who will get better and live with the help of a temporary respirator, no it would not be moral to remove it.


#8

I'm sorry for your loss. I agree with everyone else said that you should not trouble yourself with any guilt over this.

As your priest said, you did what you felt was best with the information you had.

Regarding your question of holding your son.

I believe he probably felt your love for him when you embraced him. I know this is supposition on my part, but let's say it hastened his death by a few hours (hypothetically), I believe he would have rather had you hold him then have those few hours.

Also, he's with our Lord now experiencing the ultimate in happiness and joy.

This is actually quite emotional for me as I think of my children. I will pray for you.

God bless,
Bryan


#9

God bless you and guide you in your grief.

What you did was absolutely morally permissible. You did not kill him or try to kill him. He was at death's door and you were looking at the possibility of using extraordinary means of keeping him alive.

It's a special gift that you were able to hold your son and be there with him when he passed into the next life, even if he passed sooner than expected. Don't doubt that.

As for the priest, I think it's natural to avoid making moral judgments at times like this because people are so fragile emotionally. It doesn't mean he thinks you're wrong. Maybe he thinks you're right, but he didn't want to jump up and say, "Yes! You were right!" It might seem insensitive when you still wonder what could have been. Hope this helps.


#10

Firstly, I am so very sorry about the loss of your child.

I don't think you did anything wrong, or anything to hasten his death. You held your baby and gave him warm loving arms, that he surely recognized as being those of his mother.

I'll keep you and your family in my prayers. :hug1:


#11

[quote="1ke, post:7, topic:279365"]
That is not at all what I said. I am sorry if you misinterpreted. I was referring to **your **situation, in which death was inevitable and the respirator was merely mechanically prolonging life.

From the Catechism:
2278 Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or **disproportionate to the expected outcome **can be legitimate

In this new scenario you provide, a preemie who will get better and live with the help of a temporary respirator, no it would not be moral to remove it.

[/quote]

That makes sense, thanks for clarifying - I did misunderstand. :)


#12

[quote="Trishie, post:5, topic:279365"]
Please accept my sympathy for your great loss.
Your grief and questions are natural.
You trusted your priest, the guide God has placed you under, to give you direction.
In your acceptance of his words, please trust that God accepts your humble obedience.
There is no way to answer those questions with certainty in your own mind, and these questions are part of your processing this awful loss.
I do not believe God finds fault with your choices, only that He has compassion on your sadness and loss.

Holding your son was a great gift of love to him.
It was a special parental gift of love that you gave him.
Your sorrow never to have held him would have been immeasurable, so holding him was also God's gift to you.

[/quote]

Wow. Yes.


#13

Thank you all, I appreciate your thoughts very much. :hug1:


#14

My sympathy on your loss.

As a veterinarian, I deal with the loss of patients on an (almost) weekly basis. Sometimes that loss involves a decision by the owners who make the decision for euthanasia.

(Not related to your situation, but stay with me here)

I usually try to tell them that it's very normal to question whether or not they made the right decision, now, in a week, or even several months from now....rarely years from now.

You may experience the same thing; questioning or second guessing. And it's OK to do so. A lot of emotional "stuff" goes into the grieving process. If you find it difficult, it may be helpful to seek out guidance from a good Catholic counselor; your priest may have references.

I don't mean to sound flippant, but how exciting will it be to see your son again someday in the afterlife!

God Bless.


#15

Thanks for your post. Your perspective is helpful to me. That’s exactly it, and for me, as we approach the 1st anniversary of our son’s death, our thoughts naturally go to some of the decisions that were made and that time last year. I have been assured by a professional that it is perfectly normal, especially around the 1 yr timeframe.

Nothing prepares you for this. My husband and I have had end of life discussions, but revolving around parents, grandparents or ourselves - never our children. They don’t teach you in childbirth, parenting, or religious education classes how to prepare for this, and I doubt anyone is truely prepared.

Interestingly, the hospital social worker told us after our son’s death that the team didn’t follow policy by “asking” us to discontinue the respirator in the way that they did. They have found this decision haunts almost all parents and is hard to deal with long term The dr’s are supposed to make the decision, explaining the rationale to parents, who could still say “no”, but the burden of making the decision doesn’t rest with the parents.

The thought of seeing my son again someday brings me great joy!


#16

Dear one,

You are going through the circumstances of your son's death and wondering if things could have been different if you had done B instead of A. If you had said "no" to holding your son, I am sure you'd be grieving over that choice too. You were faced with two very bad choices, and you chose the one that you felt best for your son at the time. There was no good way to deal with what you were facing. Either way, your son was going to die. I am not ruling out a miracle, but usually when the doctors say "the end is near," it really is near.

I am glad that you are able to think about these things, and come here to talk about them with us. So many people, having gone through what your family did, would bottle everything up inside and perhaps turn to substances in order to numb their grief and pain.

Your messages give me tears, as a mother, this is our worst nightmare - to be helpless in the face of our child dying. God bless you. I will pray for you. Let all the tears, questions, anger, doubts come out.


#17

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