In quarantine I began watching one of my favorite soap operas again. OK, I am lying. I was already watching it. Do not judge me. I have watched this soap since I was ten years old. I know more about the history of the characters on General Hospital than I do about my own history. The families, the story lines the deaths and face swaps. All of it.
This week on GH, Sonny Corinthos is saying goodbye to his father who is in the last stages of life. He has Alzheimer’s and the show has done a decent job of giving voice to the suffering that a family goes through when one of them members has this disease. But what has really stood out to me is how they have shown all the choices that families must make at the end of life for a loved one. I have rarely seen the honesty and the complexity of the situation depicted so well on TV.
There are so many things about end of life care that are often ignored in debates on the issue.
I have been in the room three times when decisions about withdrawing care from someone who was in the end stages of life. It is not an easy conversation. The decision always comes down to the fact that care can be given that will not change the outcome of death. Withdrawing care is different for each person.
For one, it was taking them off the ventilator that was the only thing keeping them alive. For another is was stopping fluids and nutrition because they body was in organ failure. The organs were not able to process either food or water. The fluid would go in between tissues and cause something called “third spacing”. The nutrition caused the person to have chronic stomach issues that turned into an infection called C-Diff, which is miserable and highly contagious.
The last one decided for herself that she no longer wanted to be poked and tested. She had congestive heart failure and had to have fluid drained from her lungs frequently. She ended up fighting an infection they could not figure out when she decided she was done with it all. She wanted to live out the rest of her life in peace. And her last two months were that.
I never have seen anyone have such a peaceful death.
In all these cases it could be said that they were denied food and water, but what is missing from that argument is that they could no longer process food and water due to organ failure. Their body had stopped working and their organs began failing.
Another aspect that is not spoken about when discussing sitting with a dying person is the need for their loved ones to say goodbye. That requires sitting with them, with the sounds and smells of death. There are both.
My mother was a nurse’s aide when I was growing up. I went with her to work all the time and when I got older, I also became a nurse’s aide at a nursing home. I can walk into a room and know there is someone dying in there just by the smell. It is something you get to know after doing that job for a while.
In this storyline, they cover that somewhat, better than anything I have ever seen on a TV show. They cover the feeling of helplessness when the person you love started breathing slower and slower and you want to stop it and help but you know you cannot do anything. It also covers the amount of time it takes to sit by the bedside of a dying person. It is unpredictable. In our culture people do not sit by the bedside of their dying loved ones enough for it to make sense when you call into work and say, “My Tia is dying, I can’t work today and maybe need off for a few weeks,” without losing your job.
If you do have a job that is understanding, you still lose the money. We do not have a culture that respects death or gives people space to sit with their dying loved ones and then more space to mourn them. We have lost almost all notion of a death bed.
I am glad the show I like took on these issues, and more so that it was a soap opera. I hope that we can learn from it so we can begin to go back to the days when people were surrounded by loved ones when they die. I have seen plenty of people die alone and I would not wish that on my worst enemy.
Leticia Ochoa Adams writes from Texas, on life, death, grief, suicide, faith, motherhood, doubts and whatever (else) happens to be on her mind.
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