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.