My cousin’s mother-in-law is in her late 90s. She had horrible osteoporosis and can barely move. She has little cognitive function left. She requires nearly 24-hour care and no one would even attempt to say she has any quality of life left. She told her son years ago that she was “ready to go,” and had had enough.
And yet when I asked my cousin’s husband if his mother had any do-not-resuscitate orders, or had ever completed an advanced director outlining her wishes of what kind of end-of-life care she wanted, he said no. His sister, he said, just wasn’t ready for that yet. So what, I asked, will you do when/if your mother gets pneumonia? Will you treat it with antibiotics? Will you put her on a respirator? If she is no longer able to eat, will you feed her through a tube?
He couldn’t answer. And he was clearly uncomfortable with the questions.
Therein lies the rub. These are conversations that this woman, her doctor and her family should have had years ago. Heck, I’m only 48 and yet my husband and I completed our durable powers of attorney and advanced directives outlining our end-of-life wishes years ago. We’re both in the healthcare field; we know what can happen at the end if you aren’t clear.
What happens is that we throw money and technology at the patient in a desperate attempt to thwart death. That’s why one-fourth of all Medicare expenditures are for the last year of life, an amount that hasn’t changed in 20 years. Don’t take my word for it — read the Health Affairs article here.
And yet I doubt most people who have watched an elderly loved one die would say that the death was a positive experience. How can it be when you’re filled with tubes and surrounded by machines, when doctors keep ordering painful tests rather than allowing you to slip peacefully away in a quiet room, whether in a hospital or at home, kept comfortable with medication and oxygen?
The article I cited above was written in 2001, 10 years ago. In it, the authors note that the so-called “high cost of dying” is actually just the high cost of caring for someone with severe illness. The results of their study, the authors add, “emphasize the need to include end-of-life issues in discussions of other aspects of Medicare policy.”
The effect? Not only does research show that such planning could save money, but, more importantly, it can improve the quality of the dying experience. Julie Appleby of USA Today wrote a very moving article about this in 2006. I strongly recommend reading it.
So you can understand the swing of emotions I’ve felt this week watching the Obama administration first issue a new administrative policy authorizing payment to doctors for having end-of-life discussions with their Medicare patients and then rescind the policy a few days later, ostensibly for “administrative reasons” but, as everyone knows, really for political reasons. The death panels, it seemed, were back.
I’m sorry, but no matter how hard I try I can’t understand why some people think that talking with your doctor — and paying him/her for the time required to have these difficult conversations — will hasten your death or result in the decisions related to your end-of-life care being removed from your control. If you don’t have that discussion then you are placing control of your dying entirely in the hands of the medical establishment, which is then bound by law and ethics to do everything possible to keep you alive, no matter what the economic or quality-of-life costs.
The only thing we know for sure in this life is that it will end. How it ends should be our decision, not the medical establishment’s.
*This blog post was originally published at A Medical Writer's Musings on Medicine, Health Care, and the Writing Life*