If you want to make hospice workers wince, just tell them about an unresponsive patient with no discernible quality of life alive only on account of feeding tubes and the like. And not only that, some family members insist on this even with no anticipated increase and possibly even a decrease in the patient’s quality of life. As one of my clients who did not request this for his own dying loved one said, “There is a difference between living and between merely existing.” However, the common wisdom is that the motive for family members who do beg to differ and wish to “do everything possible” to maintain their loved one’s life, stems from their own fears of death. Or that by pulling the plug they are sinning or at the very least will feel guilty about giving up.
I think a different fear drives some families to keep their loved ones nominally alive. It is the fear of launching probably the hardest task one can undertake: grieving. Let us suppose for the moment that we are looking at a case where avoiding grief is the primary reason the ventilator and whatnot are plugging away with no end in sight. As awful as that is, it is a way to psychologically stall time. It sticks the patient in the twilight zone between living and being dead. He is being put on hold if I may say. But the family too is in suspended animation, no longer relating to their loved one in the usual understanding of “relating.” Yet, neither can they go full swing into grieving because the patient is not dead. No funeral can take place to do its job of acknowledging the end of a life and of lending public support to the family’s grief. No friends can affirm how sad it is and be there to offer condolences and ongoing offers of help. Whatever grieving does leak through “in advance” is lonely and unarticulated and unsupported.
Fear is so powerful that it can cause cruelty and unethical behavior. A supervisor’s fear of being outperformed by a subordinate can result in that subordinate’s dismissal. Fear of grieving can result in keeping someone alive even when there is a “negative” quality of life due to pain. Let us release them and us from our holding cells. Let us a face the repercussions on our own souls and our own reduced quality of life if we let fear rule over us. Muster enough strength to let our loved ones rest in peace.