I struggle with the fact that I sometimes want to be one of those happy, fuzzy bloggers who only blogs of beautiful inspiration and lovely thoughts. The problem is that trying to force myself into just that box is against my very nature. I'm a ranter who needs to periodically grab my soapbox and shout to the world about its problems. If I were vying for President or Miss America, people would call this my platform. My friends just shake their heads, silently thankful that I have a blog where I can vent.
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,
"The subject seems to reach national awareness mainly as a question of who should “win” when the expensive decisions are made: the insurers and the taxpayers footing the bill or the patient battling for his or her life. Budget hawks urge us to face the fact that we can’t afford everything."
I absolutely cannot wrap my mind around how we've created a system that would allow a doctor/hospital/insurance company to deny care that might save some one's life based on their ability to pay. Where is the humanity in that? I know folks on the opposite side of the spectrum would argue what I advocate for is socialism and point to the age old examples of waiting so long to see a doctor that you are essentially denied care. They would talk about competition brought on by the quest for higher profits as a tool to stimulate innovative research and treatments. I get that, and I reject it. I wish I were genius enough to have come up with a solution, but all I can offer is that this cannot possibly be the path we go down. The only person who should have the right to deny themselves care is the patient.
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.
The men and women who provide hospice care are truly amazing human beings. I can't put it any better than the author does.
"In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while."
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.