Submitted by an EOLWA volunteer ambassador
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Nineteen years ago, a lack of information about end-of-life choice sent my mother’s life down a tragic journey of suffering.
A lack of information that resulted in her living in a semi-vegetative state the last five years of her life, medicated and sedated to manage her daily tremors, and losing all quality of life.
It is hard to describe what it felt like to witness this kind of human suffering and know there was nothing we could do. But what was worse, was learning too late in her disease, that there were steps that could have been taken to avoid her suffering.
Steps that were never introduced to my mother by any of her care providers. Not because of ill intent, apathy, or lack of care. Quite the opposite. My mother’s doctors were wonderful at providing access to the critical resources she needed to “live” with her disease. But what they didn’t do, was provide access to what choices she had if she didn’t want to live with it.
The topic was never raised, a conversation was never encouraged and, as a result, the end of her life was heartbreaking. My mom would have wanted to know what choices she had to manage the course of her disease. She would have welcomed the chance to know how to avoid her own suffering and that of her family.
She would have openly accepted all discussion to avoid extreme measures to sustain her life if she became ill from something other than her disease, like pneumonia, a heart attack, or an infection. She would have chosen hospice care instead of curative treatment. She would have been fine talking about dying, and the end of her life. But she never got the chance to tell us, or her doctors, any of these things.
Her care team kept us all focused on keeping her alive. It is estimated that 8 out of 10 people in our state have experiences just like my mother.
They are never made aware of their end-of-life options when they become seriously ill. And because of this lack of knowledge, far too many people suffer and die badly. Even the simplest wish to die at home can be complicated if your advance directives are not clear about what kind of care you expect at the end of your life.
This is why 80 percent of people die in hospitals, even though nearly all of them wanted to die at home. They aren’t given the options of how to make that happen. It’s time to address the lack of awareness around end-of-life planning and end-of-life options.
Everyone deserves a chance to die well. This is why I’m proud to be one of many volunteers supporting the End of Life Ready campaign to help educate thousands of people in our state about how to best prepare for and manage their end-of-life wishes.
Join our End of Life Ready effort! We are actively scheduling presentations for community groups for summer and fall 2021.
If you are part of a group that would welcome an End of Life Ready presentation, or would like to suggest a community group to reach out to, please request a presentation at www.endoflifewa.org/ready or contact Rachel Haxtema by writing an email to firstname.lastname@example.org
If you would like to join our educational ambassador group as a volunteer presenter – contact Rachel or find volunteer information at www.endoflifewa.org/volunteer
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