When my mother died, she died in a hospital. Hospitalised with a malignant brain tumour on her brain stem that caused a stroke, she lived three days from her stroke until her death when we turned off life support. And when she died, we all gathered around her in the hospital room and sang “Amazing Grace” to her as she died.
In those last few days, Mum was on a respirator and IV fluids, but she was fairly responsive when we spoke with her, squeezing our hands or nodding her head. In other words, she was dying, but still showed all the signs of living and being engaged with her surroundings. She couldn’t talk, but she definitely knew we were there, and every time I would lay next to her on the bed, she would nod her head up and down, and I knew she wanted me there.
Taking her off life support seemed counter-intuitive and a difficult decision to make. But it wasn’t my decision. Mum had a living will.
The summer before, my mother had taken a course in death and dying, the same year I took one on Living and Dying in Buddhist Cultures, and we had discussed in detail our thoughts on dying, death, and the ways in which people die. My mother had clear opinions on several aspects of death and dying, and strong opinions that people should be allowed to have as much control as possible about the circumstances of their dying. And it was with this in mind that she wrote her living will.
It was so much easier said than done.
When the doctors said that she should be taken off life support, my step-father (who knew she had a living will) said no, that he wasn’t ready. Other family members also protested. The doctors said she would die when taken off of life support (the very language of these machines is counter-intuitive – if you take someone off of life support, are you then death-supporting?) and that at this point, there was no longer any brain activity.
This is when I told the doctors and our family that Mum had a living will, and argued that she, herself, did not want to be on life support, and we should turn it off (how much I wished she could wake up so I could ask her again if she was sure about this – did she change her mind now that it meant really dying? Were we doing the right thing?).
In the end, living wills are a gift – to yourself and to your family. Because even though I wanted more than anything to leave my mother on life support, I knew that by taking her off of it, I was supporting her vision of life, and helping her control how she died.
My greatest gift to her was simply following her wishes, and her greatest gift to me – well that was her, and the ways in which she taught me how to live to the very end – even when we are dying.
If you don’t have a living will (sometimes called an advanced directive) – you should. And you don’t need to go to a lawyer to write one. You can find a simple form online and simply print it out to have with you. Or if you really want to plan ahead, you can register online so that medical professional are made aware of your wishes.
Save your family from the agony of deciding what to do. Decide what you want for yourself, and discuss it with them – tell them now that you are sure that this is what you want, and then thank them for sticking to your vision of your life and death.
And then live, until the very end.
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