To the Editor:

I live in North Carolina, one of the many states that has not joined you in allowing medical aid in dying. Recently, I sat with my brother as he chose to use this option. He had multiple sclerosis for 40 years and his last years have been unbearable. He was totally dependent on his kind and loving Medicaid home health care workers. They came in the morning to dress and feed him, returned at noon to feed him lunch and again at night to put him to bed. If they were late or something unforeseen came up, he could be trapped in his wheel chair or bed for many hours.
He lived like this for many years, but this last year his disability was so extreme that he could only maneuver his wheel chair with his chin. He depended on Siri and Alexis to turn on lights, raise the heat, and change TV channels. Yet he adjusted and lived a joyful happy life, as well as he could. But last summer when he had serious health issues his physicians referred him to hospice. He was told that he had less than 6 months to live, then he decided to take advantage of the new medical aid law in Colorado.
This law gave him a great gift — TIME. He was able to choose dear friends and family to be with him. It was a quiet and peaceful scene with loved ones touching and holding him. He was the one who made the decision and the one who took the medication. His death was the final act that he could control. It touched all of us in ways that were deeper and more life affirming than any of us expected.
Because of this gift of time, it allowed us to plan ahead. As his power of attorney, I was able to arrange for his body to be used for research, especially into MS, help his wife to maintain ownership of their home, and plan a memorial to celebrate his life. But I also found out how complicated it is to take care of final legal and property issues with this decision.
The most important piece of time he received, was getting to greet, cry and love all of his friends, health care workers, and meals-on-wheels volunteers who came to say goodbye. He had touched so many people as he heroically struggled with his disability and still kept a positive outlook. How rare it is to be able to say goodbye to those we love and care for at the end of our life. We were fortunate that my brother lived in a state that allowed him to decide when and how his life would end, which gave him and us time.
But in spite of this wonderful gift Colorado allowed my brother, of death with dignity, there were some bumps in the road. I feel I should warn others who are considering this option that they need to carefully think about who to include in telling about their plans. Unfortunately, an acquaintance who heard about his decision was very opposed to this option for his personal religious reasons. He caused untold pain for my brother and his family. Another consideration is the cost of the medication which was quite high and not covered by Medicaid, Medicare or other insurance.
I especially want to thank all of my brother’s care givers and medical staff who provided him a dignified, final end to his life. The future would have been filled with 24-hour nursing care, inability to move or speak, a feeding tube and pain. This choice allowed him to be surrounded by his loved ones, to listen to music he loved, to feel love and caring. He knew that he was moving to another stage and welcomed it.
So, I thank you Colorado.

 

Patti Phelps

Washington