Let’s Remember Agreeing to Disagree is not Easy

Years ago, I had one of those days with hours of back-to-back meetings. By the time I got to my voice messages, I had four missed calls from one of our funders. Their message said, “Please call me ASAP.” When I called back, I was stunned. She told me that someone on my staff made a decision and if it wasn’t reversed immediately, an advocacy organization would go to the press. Here is the background.
Our organization served an individual, who I will call Naomi (not her real name). She was a woman in her 20s whose mother passed away and selected our organization as the right place to support Naomi. She was a bubbly and bright young woman who radiated joy and went through every day with a smile. She was constantly moving, ready to jump in the car and go anywhere. She was part of a large family who worshipped together every Sunday. Her sister would pick her up at home and drive her to meet the rest of the family at church.
Unfortunately, she was experiencing chronic kidney failure. Her journey with it was challenging, and suddenly she was in “end stage renal failure.” We were all stunned and saddened by the news. This left her with only two choices for her, dialysis, or hospice.
As her service provider, we wanted to make sure that her family understood that it was their decision on how to proceed. We conferred with a local advocacy organization and the hospital ethics committee to affirm this decision. The family was very understanding and immediately began researching her situation. They concluded that as her substitute medical decision maker, they had a hard decision to make. They looked at Naomi’s quality of life, and after careful deliberation, decided that she would be negatively affected by the routine requirements of dialysis and chose to do hospice.
As a young girl in her 20s, Naomi had so much life left to live. For a few staff members at another organization who also supported Naomi, the decision to them was wrong. Naomi, in their opinion was being denied treatment. To them, it felt like they were not giving her a fighting chance by pursuing dialysis. The staff members notified the funder and reported Naomi’s status, which is when the frantic calls were made to me.
We immediately explained the law and the family’s deep love for Naomi. Given the big difference of opinion, the funder felt compelled to take the decision to court. A hearing was scheduled with a judge. The judge was not moved to follow the family’s decision either, and they were advised to order dialysis or lose their right to decide. Dialysis was requested.
With significant effort to support Naomi, the dialysis was attempted. As the family expected, Naomi did not do well, multiple attempts to support her to sit still were made without success and in fact with the need for hospitalizations. The family then decided to take her home to live, and a few weeks later she passed away. The agency stepped in to help the family financially with the funeral.
As you read this very true story, you may find yourself agreeing with the staff at the other provider and the judge, Naomi should be signed up for dialysis. Of course, everyone with a disability should have access to dialysis. They should not be denied dialysis because of their disability. Then again, you may have agreed with the family. They loved Naomi. It was a personal and difficult decision for the family. Why should we second guess the family? Wasn’t the family right to consider her quality of life? It is hard to disagree with either choice.
This story reminds me every day that just because something is law does not mean we will all agree. Just because we have a personal choice doesn’t mean someone else will believe we made a wise decision. For me, it was hard. I loved Naomi, too.