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Health April 2012

Life Support Choices: Accept Rather Than Judge

By Lois Greene Stone

Decisions are personal, and often based on religious values, experiences, and relationships. Choices are painful, not lightly considered, and an individual’s judgment. For example, to remove life-support or not from a loved one shouldn’t be challenged.

Shh. Don’t say anything. Just extend your hand and, without words, comfort.

We’ve all been exposed to "Well, I would never allow my child to...,” and "He must have been in the wrong place at the wrong time to be so injured,” "Of course she should not have had chemotherapy when she really was going to die soon anyway,” "How could she ignore his wishes to prefer no heroics if he’d have to be on machines for even breathing,”

"Caregiving is not stressful if she did it the way I told her,” and other such phrases. Can you visualize the body language of these people who pretend to mean well but feel dictating is their right?

I so want to tell any person who assumes only his opinion is correct as he takes a position on someone else’s actions: unless you are in the proverbial shoes of another, can the pinching or swelling be felt? You know-it-all can simply discard the “shoes” when taken off, while a sufferer cannot.

Decisions are personal, and often based on religious values, experiences, and relationships.

Choices are painful, not lightly considered, and an individual’s judgment. For example, to remove life-support or not from a loved one shouldn’t be challenged. One person prefers to sit by the patient and just touch still-warm skin, unable to let go. Another might ask to remove the machine so the dying of his cherished family member is not prolonged. The living, in the silence, also cries for help to be strong and wise.

The living. When my mother’s unveiling of her gravestone was nearing, a year after her burial, I gave engravers the text I wanted on her footmarker. An uncle felt only the formula wife-mother-grandmother was “correct” (below her name, birth/death dates) as her life was fulfilled as a wife (although she spent her final 32 years alone since my father died at age 45), she was needed as a mother, and was skilled as a grandmother to a generation my father didn’t live to see.

For me, just these words had no identity. There certainly was no space for me to note that she’d once played the piano in Carnegie Hall, or anything I considered a highlight. But wife/mother/ grandmother was a blur and I couldn’t have her just be seen that way. Since the alive walk graveyards and read or make rubbings of stones, I thought of those who might, decades ahead, pause at hers because of some distinct information, even if it were only to say hmmm.

In various American museums and historical societies, are photos, letters, memorabilia, speeches she wrote, even items she handmade. And I knew the Smithsonian not only had many, but anyone might be able to access her name through that registrar and, possibly, find out where else her life had been documented. I felt strongly that on her footmarker there be a line noting she had personal items in the Smithsonian. Those few words fit the space as well. I, the living, wanted that to be etched on the bronze plate cradled by green grass. She would have just preferred what my uncle considered. The only verbal confrontation I ever remember with her brother was about that; but since I was paying for it, he had no choice but to accept my requirement. Yes, the pat wife/mother/grandmother was inscribed as well.

As a gravestone’s words are really for the living, isn’t the dilemma to remove or keep life support for a loved-but-dying family member one that the living chooses in order to be able to function once the cherished person’s breathing ceases? Of course there’s guilt that the patient lingered and guilt that the personal but desperate need just to stand by that warm human kept the machines going. "I’m not ready to let go yet" is a phrase all bystanders should accept with sensitivity and understanding. But we too often hear negative comments by a person who isn’t in that place in time, and each makes hasty judgments to build up his imagined superior reasoning.

Many religions have a prayer for healing, and an ill person’s name might be mentioned aloud during a service. Might a prayer for healing be whispered for those who are watching the ill? Might a prayer for strength be whispered for those who are holding hands with loved ones as breathing slows to a halt? Might we all extend our hands and, without words, comfort?