At what point do we say STOP?

I recently watched the Netflix series “From Scratch,” which is based on the book by Tembi Locke. As you move through your life after a death, trying to navigate your grief, you will experience triggers that take you right back to a time, in many ways you want to forget, but as I am realizing, I need to remember. This series was beautiful, well done, and I recommend it, however it was triggering for me. It reminded me how messy things can be when someone is dying in a hospital environment, and how important it is for us to advocate for better, kinder, and more compassionate end-of-life care.

My brother was in the ICU for eighteen days and that in itself was difficult, but as a hospice nurse, everything about it went against what I believe in how human beings should be cared for when they are dying. While they were kind, and did their job well, at no time did I feel a personal compassionate connection from anyone, and when I asked blunt questions like, “is he going to die,” no one had an answer for me. I begged to speak to someone in palliative care, to provide him with a kinder, and more compassionate death, which I knew was a very possible reality, but no one would go there with me. I kept hearing, “it’s not time for that yet,” and I wanted to scream out loud … “at what point will it be time to have this conversation?????” I felt completely helpless…

On the night that he died, we ran to the hospital after receiving the call to come quickly, and when we approached his room, I screamed out “STOP,” as I witnessed twenty different people trying to beat him back to life. I understand how harsh that must sound, but from my view, that is exactly what I was witnessing… and it was because he chose to have all measures taken to save his life. At the time he voiced that decision, I know without any doubt that he had no idea what that truly meant. Thankfully they did stop, and we had about three minutes to sit down next to him, take his hand, tell him he was loved, and say goodbye. It was one of the most difficult times of my life.

My point in this blog is to please decide right now to allow someone else to be your voice when you do not have one. Research what “full code” means and know that even if all drastic measures are taken, there is no guarantee that you will live, or that your quality of life would be worth any of that. Know that you have a choice, even if you do not have a voice.

“Full code means that if a person's heart stopped beating and/or they stopped breathing, all resuscitation procedures will be provided to keep them alive. This process can include chest compressions, intubation, and defibrillation and is referred to as CPR.” This is the nice version of what the reality of it truly looks like, especially to those who are witnessing it.

In many situations, full code/CPR can save a life, it can bring someone back to life and they can live many more years beautifully, without pain or suffering of any kind. It is important to know the truth about what full code/CPR would mean for each person individually. I knew that everything they were doing to “save his life,” because that was what he wanted, would have never allowed him to have a life without pain or suffering, physically or emotionally. At what point do we say STOP?

We do not want to imagine the people we love dying, we certainly do not want to imagine them in the ICU, with machines being the only thing keeping them alive, and the sounds of them being the last thing you or they hear as you say goodbye. Know that palliative care, which I consider compassionate care, can be offered in a hospital situation. Your voice can be the difference between what I experienced, and a gentler, kinder version of that.

I had a conversation with a woman just the other day who asked why her oncologist would not give a hospice order for her husband. He was home with her, weak, declining quickly, and he was dying, and she did not have the support I explained she could have if he was on palliative care or hospice. She said they kept telling her, “It is not time yet.”

I do not understand why people are left to wait until the very last moment to begin palliative or hospice care. This makes no sense to me.

Human beings deserve to be cared for with kindness and compassion when they are dying. If you do not make your wishes known, someone will make decisions for you. Please put in writing now who can speak on your behalf if you are unable to. Let’s work collaboratively to help improve the way people are cared for when they are dying.

xo

Gabby

“Compassion is the wish to see others free from suffering.”

– Dalai Lama

Pease note... this is in no way meant to be criticism for the ICU or the team of incredible people who work there. Theirs is not an easy job, one I admittedly could not do, and highly respect. This blog is about advocating for a kind and compassionate death, making your wishes known, and asking someone else to speak for you if you cannot speak for yourself.