A 17-year-old boy lies in a bed, hooked to a ventilator pumping oxygen into his lungs, tubes in his veins infusing medications to maintain his blood pressure, and various wires connecting to the monitors. Mom sits in the recliner next to the bed. The anguish, pain and torture visible on her face. The infamous and awful words “there is nothing more we can do” spoken to her and the family that surrounds the bed.
She says “I don’t know his wishes; we never talked about it.”
While we all hope and pray for this to never happen to us, life is fragile; and this happens daily. As an ICU nurse I have seen this happen repeatedly. “I don’t know” said through panic, tears and exhaustion. “We never talked about it” said through pain, grief, and fear. “It happened so suddenly,” said through disbelief, fog and disconnection.
Then the decisions are made, options are given, the guesses of wishes and wants. Decisions that have impacts far reaching emotionally and financially. The fix is simple, talk about it.
Whether you need to set the mood for a deep discussion or throw the topic out at the dinner table, do it. I promise you there will never be a perfect time to discuss what someone’s wishes are at death but they will be better now than in the moment they are needed. Because once those answers are needed, the questions won’t be able to be answered by the person in the bed.
Things to ask:
Although we hope and pray we will never have to use this information, I will hope and pray alongside you, because the answers to these questions remove guilt during a moment of torture. These answers give strength to those who have to speak them. These answers help with healing as life goes on.
Two daughters sit next to their mom after she had a large, non-survivable stroke. They struggle with decisions, but when asked “What were your mom’s wishes?” they both said “She didn’t want any tubes.” The tubes were removed. Their mom, surrounded by her family, died a few days later. Their mom had given them one last gift, protected them from a lifetime of questioning: did we do the ‘right’ thing? Because she gave them the answer, these daughters didn’t have to question their decision, and didn’t have the usual guilt that follows the question.
When my son turned of age to be my voice, and I gave him my wishes, he told me he didn’t know if he could make the choice. I told him, “It isn’t your choice to make, it is mine. You just have to be my voice.”
Who is going to be your voice?
Who gets to make the choice: you or them?
Give them the gift of your words, the gift of no guilt while they grieve.