The Holding Cell

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.

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8 thoughts on “The Holding Cell

  1. Sometimes family want to prolong life because of guilt over what they have or haven’t done themselves. After death, there’s no more saying sorry.

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  2. Craig Kuehn says:

    Fear of grief makes so much sense, especially when it is difficult to discern and the loved ones don’t know how to articulate it.

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    • You are so right. People can be unaware they are grieving, such as not understanding that such phenomena as increased irritability, forgetfulness, stomach aches and so on can be part of it, not just tears and anger. It is so very important to articulate one’s grief and be aware that one is grieving in the first place in order to go forward with all the tasks of grieving. Hospice team members like you thankfully help families do the discerning and articulating.

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  3. Consuelo M Beck-Sague, MD says:

    For the record, just sayin’: often, the family’s control over the situation is an illusion. Medical and hospice staff with a significant (including economic) interest in more days or weeks or months of Limbo for a patient can intimidate family members… including family members who are themselves healthcare or hospice providers. Also the long arm of the law and the power of “faith-based” facilities can militate against family responding to their better instincts, even in the presence of Living Wills and other sound documentation. In Florida, patients, families, and even sympathetic professionals face rigid, draconian laws that criminalize withdrawal of care, and may even put providers in the position of feeling like they have to continue pointless prolongation-of-death “care” or risk their licenses and livelihoods. The memory of the Schiavo case is fresh in many minds. Just sayin’.

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    • Very glad you brought up all these other factors in addition to fear of grief that conspire to derail proper end-of-life care. But take heart; a backlash is forming. Physician Atul Gawanda’s book, Being Mortal: Medicine and What Matter in the End, is a bestseller; people are attending “Death Cafes” to raise awareness; and I hope such blog posts as mine and many many other bloggers are all helping to turn the last chapter of our lives into happier endings. Family members: take courage! Don’t be intimidated!

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  4. In Hindu philosophy, the fear of death is at the heart of all fears — including that of grieving. Thank you for your thoughtful and important reflections Karen.

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  5. […] guest article about the fear of grieving first appeared on Karen’s blog and we reprint it with her permission; the second part of the title and subheadings are ours. The […]

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