What kind of death do you want?
That’s not a question many of us probably want to think about. It presumes that we want some kind of death when many of us would simply prefer not to die. The inevitability of dying doesn’t make it easier to think about desire and death in the same sentence.
Still, death is inevitable. If I’m going to die one way or another, there are ways I would prefer to die and ways I would not prefer to die. To the degree that I end up having any say in the matter, I’d like to die peacefully, comfortably, and with enough advance warning to come to terms with the fact that I’m dying and to share with the people close to me things I want them to know before I’m gone. I want privacy, and I want company. I want affection if if there are people who feel affectionate toward me. I know how hard it is to achieve these desires as they related to dying in the United States and I know that it will take a lot of preparation on my part to make it at all likely that I can have them.
The device most commonly used in the United States to communicate end of life care wishes is the advance directive. A typical advance directive is a pretty confusing document, and Haider Warraich writes eloquently in his book Modern Death about their inadequacy as an instrument. For one thing, they are generally without context, which makes them hard to interpret in very specific circumstances that are often unfolding quickly. Let me give you an example:
My mother had an advance directive that indicated she did not want CPR or artificial life support if she was in a condition from which she was unlikely to recover. She’d had that since the start of her terminal cancer diagnosis. At one point early in her treatment she needed to be rushed to the ICU in case a particular class of blood pressure drugs needed to be administered. That didn’t seem to violate her advance directive (and once she got to the ICU her blood pressure stabilized on its own). One of the things we got accustomed to during her treatment was the use of IV fluids to help support her blood pressure when it was low. Later in her illness, after a point when we decided we would not even initiate antibiotics to fight infection, her blood pressure became unstable. The attending physician was surprised when I said I wanted fluids to be administered. Wasn’t that artificial life support? I’d already communicated that we did not want to initiate artificial feeding or hydration on an ongoing basis, but at first I didn’t see IV fluids in a moment of low blood pressure as “life support.” Of course it was, and of course it didn’t really make sense to refuse hydration and expect occasional IV fluids. Our ultimate resolution was that IV fluids would be continued if needed until we reached a point where artificial hydration was actually recommended and refused.
It’s impossible to anticipate every eventuality, but there are documents that do a better job of communicating the broad range of a person’s end of life wishes than the standard advance directive. My favorite, and one that was given to us when my mother was first diagnosed with her terminal cancer, is called Five Wishes, a program of Aging With Dignity. Wish #1 refers to the designation of a health care proxy and the scope of their authority. Wish #2 refers to the kind of medical treatment a person want in a number of different contexts and even includes a place for them to explain what they consider “life support” to mean. Wish #3 and #4 refer to what kind of care they want to keep them comfortable and what kind of interaction they desire. Wish #5 considers things they want people to know about their feelings about family and friends, about the process of dying, and about their desires regarding memorials.
This is a start, and it reminds me of some of the complicated conversations arising about sex and consent. I’ll discuss those in my next blog post. One thing I’ll say here, though, is that a common thread in conversations about what is or isn’t desired regarding death need to be ongoing. Warraich points out that people’s desires about what kind of treatment they want change over time, and that often that change is in favor of less treatment, not more. Each of us has particular fears, concerns, and wishes, and those wishes change as our circumstances change. Just like with sex, the fact that something is desired in one instance doesn’t mean it will continue to be desired. Frequent check-ins are necessary.
We need to get comfortable talking about our death desires. The quality of our lives, and our deaths, depend on it.
This is a sample Five Wishes Document: https://fivewishes.org/docs/default-source/Samples/five-wishes-sample.pdf
Standard Advance Directive forms by State can be found here: http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289
Modern Death: How Medicine Changed the End of Life, by Haider Warraich, M. D.