One of the big books on death/dying is “Being Mortal” by Atul Gawande. Recently, Hospice sponsored a viewing of a PBS show Frontline that interviewed this doctor and several other “specialists.” It was produced only a few years ago. (It is available online for viewing at pbs.com if you are interested. I will have a link at the end of the blog.)
I don’t usually get emotional much at these events because I am so consistently immersed in the topic, but this one got to me. There was a video of a man who they were discussing Bilirubin levels with. He was strikingly yellow from jaundice. It all came back to me with a rush. All the same lingo, walking in and seeing Tim’s face and body in strikingly yellow color. That was it, I was done for.
This is not meant to be criticism, just observation and it was fascinating to me. Here was this documentary with doctors, some actually oncology doctors. One was considered a “palliative care expert.” Their ability to handle medical information and dying patients was a bit abysmal. Most of them deal with it day after day, and yet that had no grasp on how to handle the dying with dignity. In fact, usually the patients were much more comfortable than the medical teams working with them.
The author and narrator said it himself. Three doctors in his own family. When terminal illness struck, not one of them knew what to do. Wow.
One of the things I walked away with though, is what I’ve heard over and over again. Doctors feel like anything less than cure is a failure. Of course everyone knows we eventually die, yet somehow they expect themselves to do the impossible. What’s worse yet, is that living forever (in any condition) isn’t even desirable for most. What a mountain of a problem.
Yet I felt hopeful. Here is a doctor that has put his failures on TV for the world to see. That is extremely rare in our culture. In fact, the scene opens with a family who has lost someone relatively young. He tells the widower that he outright lied to his wife. He gave her hope to live when there was none. He couldn’t tell her the truth. Being willing to admit all of that in hindsight though, is incredibly brave in my opinion. And it leaves the door wide open for change and improvement.
The biggest lesson from the documentary, was that the conversations all were happening much, much too late in the game. By the time the doctors faced the truth, it left little or no time for people to attack their bucket lists, say goodbye, get their affairs in order.
The other thing I took away, was how incredibly blessed and lucky Tim and I were. Somehow, we knew to always ask about prognosis. We were able to make the most possible out of the five months we had. We had lots of docs and medical peeps who were honest and open with us. At the very end, our Hospice nurse Patty was beyond outstanding when Tim was grappling with the truth of the end of his mortal life. She didn’t stumble, not even a tiny bit. She was strong and steadfast and honest.
One of the closing comments was short but profound. We need to treat persons, not patients. Period.
My last observation was this: Someone needs to design those damn hospital beds for the end of life that are double in size. It is beyond heartbreaking to admit the reality and not be able to climb in next to your loved one at such a sacred time. Footage after footage showed people in their dying hours with their loving support next to them, but not near enough. If someone wants to market that little nugget, please feel free but mention me when you make your millions.
Thanks Dr. Gawande for making such a courageous documentary.