There is a reason for all of this rambling. Earlier today I was directed toward this article in The New Yorker on end of life care. This piece is overwhelming in so many different ways that even finding a way to capture everything it did* to me is difficult.
The state of our health care system and the politics and debates that rage around it is something that is very personal to me. I feel like over the past several years I have witnessed some of its bigger flaws as I watched my grandmother age. The author of the piece, a doctor, lures you in with the story of a young mother-to-be who discovers she has lung cancer during her 39th week of pregnancy despite living a healthy lifestyle and never having smoked. We're drawn deeper into her battle to survive, as treatment after treatment fails.
It's this fork in the road that the author wants us to ponder. The problem is that when he brings us to this point he immediately peppers the path with "...soaring cost of health care is the greatest threat to the country’s long-term solvency, and the terminally ill account for a lot of it," and "twenty-five per cent of all Medicare spending is for the five per cent of patients who are in their final year of life." I refuse to stay silent in a world where medical decisions are based on a cost-benefit analysis, despite OMB's and insurance companies' efforts to put dollar value on what a human life is worth. Anyone walking by could see that I was visibly upset as I read,
If you hang on, the article does get quite brilliant. He and I found our common ground in the land of hospice. What the author had to learn through home visits and interviews with hospice nurses and patients, we experienced first hand with my grandmother. Even in some of my earliest memories, I remember my grandmother as having health problems (back surgeries, enlarged heart). The memory of those hospital visits pale in comparison to the last two years of her life. Her health had declined so significantly that, for a while, it seemed like each week was touch and go. A particularly horrific stint in the emergency room resulted in a very frank conversation between my grandmother and my mom and grandpa about her wishes and how she wanted to live and die. She was tired. She had lived a full life and didn't want her last breaths to be taken hooked up to a ventilator with her meals delivered through feeding tubes. As her family, we supported her decision, and she was signed up for hospice.
He goes on to quote studies where patients who opt for hospice instead of innumerable last ditch efforts don't necessarily die any sooner and, in fact, have sometimes been known to live a little longer. I know that, with my grandmother, I was given almost two years with her, and I wouldn't trade those for the world. I flew home more frequently and spent almost every hour I could with her. She enjoyed the simple things like getting her hair done, having her nails painted and kicking my ass at Uno
By the end of the article, we are grudgingly friends. He lays out a case for rethinking death and rethinking care based, at least part, strengthening communication, something I can get behind.
Read the article.
*Yes, I know an article can't physically do anything to me, but words can have such a profound effect that it feels physical.