By: Joan Reed Wilson, Esq.
The last part of the Connecticut Advance Healthcare Directive form includes a section that begins “I hereby make this anatomical gift…” The section includes several boxes to check to make a choice about which organs the person wants to donate and for what reasons. One of the boxes references another Connecticut statute, 19a-289j. When I explain to clients that by checking this box, they are agreeing to allow their organs to be donated for research purposes, many immediately say, “oh no, I only want my organs used for transplant so they can help someone.” So we check a different box and make sure the wishes of the client are spelled out in the document.
I recently met with a lovely new client who told me her family’s very personal story about organ donation and it gave me chills. With her permission, I am sharing her story for those who believe that donating organs for research does not help others.
“Lois” (name changed obviously for privacy) came to my office a few weeks ago because she needed help with her husband’s probate. She explained to me that her husband had a law degree and operated a successful business. He managed most of the finances and legal affairs, not because he was controlling or she was unable, but because she was focusing on another very important matter during much of their life together. Their daughter was diagnosed at 12 years old with a very rare condition that caused her severe health problems throughout the rest of her life. The disease caused symptoms similar to ALS. Her daughter slowly began to lose the ability to care for herself and spent many months throughout her childhood in the hospital. All the while, the family had to pay for her medical care because the disease was not covered by insurance. Sadly, Lois’ daughter lost her battle with the disease at the age of 25.
At that time, although the doctors had been able to diagnose her, no one knew much about it. Lois and her husband, knowing their daughter’s wishes, agreed to donate all of her organs to research. Researchers from all over the world came to Connecticut to gather her organs. It took 10 days for the whole process. After many, many months went by, they got the news. A research team in Paris was able to discover the recessive gene that causes the disease. Further, they were able to determine that only when both parents have the recessive gene can the disease manifest in their child. Now anyone in the world can get tested and be informed about limiting the spread of this disease AND those who do suffer from this disease can have their medical costs covered by insurance…all because this family chose to donate organs for research instead of limiting the donation to transplants.
Please take the time to consider your choices for organ donation carefully. There are several ways to register to be an organ donor, including on your own Advance Healthcare Directive, at the DMV (you’ll get a red heart on your driver’s license), at Donate Life New England, and at Donate Life Connecticut.