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Explicit guidelines for advance care plans

Re: “‘Vegetative’ woman must be fed: court,” Feb. 4. It was with a terrible feeling of déjà vu that I read about the Margot Bentley case.

Re: “‘Vegetative’ woman must be fed: court,” Feb. 4.

It was with a terrible feeling of déjà vu that I read about the Margot Bentley case. My mother was diagnosed with Alzheimer’s at the age of 68, after having watched her grandmother, mother and three of her siblings die of the same disease. In the aftermath of that devastating news, she initiated a heartbreakingly difficult conversation about her personal definition of dignity, as well as her wishes when she reached a quality of life she would not want to have prolonged.

My mother shared this information in good faith with the people she loved and trusted to speak for her when she no longer had a voice, expecting that in the context of her unrelenting terminal illness, her wishes would be respected. However, as with Bentley, in the end stages of her disease, my mother’s wishes were circumvented by staff who confused caring for her in her illness with the right to re-interpret the directives for care that she expressed when she was fully cognizant.

I am concerned that this precedent threatens to invalidate the whole purpose of advance-care planning at the very time when significant health-care dollars are being spent encouraging all of us to engage in the process of making our wishes known regarding our own end-of-life care.

In this context, it is not enough for the court to say what does not constitute a valid advance-care directive. Especially for those of us who may face a similar fate, there must be explicit guidelines to ensure our right to direct our care, even when our own voice is silenced and we must rely on those we have chosen to speak for us.

Elizabeth Causton

Victoria