Today my attention was drawn to an article that evokes a very passionate response in me. It embodies all the reasons I want to go into oncology and hospice; it draws attention to some issues that directly impacted our family when Joseph was failing. It is an article in The New Yorker magazine by Dr. Atul Gawande regarding hospice and end of life decision making.
I am almost tripping over myself in my desire to say what I am feeling just now.
We sensed when Joseph was going downhill. His father and I knew things didn't look good. We requested a conversation in which we could address our desires if this should be the end for Joseph, prior to putting him on a ventilator. But that conversation did not happen, despite our inviting it. His physicians were not ready to have that conversation, even when we were. They too were invested in his getting well. And we are grateful for that. I have no critisism for Joseph's doctors or the hospital in which he was treated. But the issue remains - he spent the last four weeks of his life on a ventilator, made immobile by neuromuscular drugs that blocked his neurological impulses because he was so agitated. We live now with the questions of whether that was the right thing to do; whether he was trying to let us know he was done and ready to be done. And we did not get any time to say goodbye. Even though we watched him fade day upon day, we were unprepared for that decision and his death. It seemed to come up very suddenly. The week prior there were words of optimism. Then suddenly there was consensus. The doctors had reached the inevitable conclusion and were finally able to tell us so.
I wish so much his final days had been of better quality. The night before he was placed on the ventilator was probably the hardest night of my life, and yet the most precious. It lives in a golden glow in my memory now and brings me to tears to even think on it...tears of sorrow, gratitude, strength. He could not breathe and he was in pain. Yet he was so accepting of help, of comfort from me and so without fear. As long as I was there to help him, he was strong and brave. He requested pain medication and more oxygen and for me to stay close. I wish now we had more time together like that. He was obviously dying. We struggled toward the miracle, stumbling and uncertain, knowing it was akin to trying to win the lottery in a last desperate attempt. It would have been a kindness for the doctors and nurses to say it was okay if Joseph was done, that the hospital would help us let him go with peace and warmth and honor, that we weren't bad parents for wanting him to call this shot and that we weren't killing him by foregoing the ventilator, that he was going to die anyway. I wish so much his last days had been different. I would love to see better training for medical personnel in starting these conversations and better acceptance across the board that it is honoring the wishes of the individual who is dying that is paramount - and usually those involve a desire to be free from suffering, to be surrounded by loved ones and to be in a peaceful environment, preferably at home, without being a burden to anyone.
Read the article and let it make you think.
My family has been informed - no ICU for me if I am deemed terminal with little hope of long term survival. I don't want that lottery ticket. We all die eventually. I want it on my terms if it comes to that.