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Holvino: End Of Life Decisions

As my mother’s health deteriorated and her dementia progressed, I became more and more involved in her care.  My brother in Puerto Rico could not help.

My spouse and I became Mami’s advocates, chauffeurs, fiscal agents, companions, problem solvers and memory. I served as her interpreter when this perfectly bilingual woman began to speak only in Spanish - believing she was still speaking English.

My mother fell five times in the five months she stayed at an assisted living facility near us. Each fall involved a visit to the ER, observations, tests, and hours waiting. She could not understand what they were doing to her or why she was there - no matter my explanations. The fifth fall required a one-week hospital stay. It was clear she needed to move to a nursing home to receive better care. One afternoon they called from the nursing home: “Your mother is bleeding and we’re taking her to the ER.”

More exams and visits to specialists were ordered, but I was not consulted. In the end, a transfusion was recommended to bring her blood count up. But the transfusion would not cure what was wrong. It would only extend her life. At 87, too many things were going wrong for her. I refused the transfusion. Her primary doctor called me later that day. “Your mother has three to six months to live,” she said. After much agonizing, I decided to start hospice care. My mother was incapable of making that decision and the providers knew it. I don’t understand why they didn’t consult with me sooner. I had the right documents!

My mother is one of the 5.2 million Americans over 65 who suffer some type of dementia. The “end of life choice” bill currently being discussed in the Vermont legislature will not help these elders with their ‘end of life’ decisions.

They can no longer decide for themselves to take a lethal dose of a medication or make a rational request to their doctor to prescribe medication to end their lives. Vermont’s ‘death with dignity’ bill allows those who are still rational to end their lives, but the bill does nothing to help those who can no longer think for themselves and who depend on their families for dignity in death.

Increasingly, end-of-life decisions will be made by the spouses, adult children and the families of seniors with dementia. To help us, the bill should include a provision for ‘end of life choice’ in the advanced directives a person can sign before losing their mind to dementia. And doctors and health providers should be trained to inform and involve these families. We all need to ensure families are real partners in end of life decisions, or else one in three of us has no chance of dying in peace - or help our loved ones die with dignity.

Evangelina Holvino is a creative non-fiction writer and a free-lance consultant on issues of social differences and justice in non-profit organizations.
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