As I have stated previously in these posts, I do not intend to allow myself to live far into the condition we term dementia, should that fate befall me. However, we never know what might happen to thwart our intentions, which is why I have chosen to use advance directives as creatively as possible to prevent being forced to live a life that I find intolerable and inhumane. This is why I welcome any efforts to create the circumstances that allow everyone to have the lives and deaths they want.
When contemplating what you want when it comes to the disposition of your body, it helps to go in with the understanding that very few services are required by law. Whether you choose a simple cremation with no ceremony, body burial preceded by a conventional funeral, or donating your body to anatomical study, the legal requirements that must be fulfilled at death are so minimal most people are surprised. And this holds true in every state in the country. If you’re willing to clear your mind of what you think you have to do for a funeral, your planning will go more smoothly and more quickly.
While not everyone who reads this message, because of their own circumstances, will feel like being thankful this week, I thought I would take a break from our usual discussions to share a few thoughts that my own family has embraced for several years on Thanksgiving. It is an incomplete and changing list of some of the things we have to be thankful for, with a measure of reality thrown in to keep us from feeling too smug about being Americans, or living in America. The thoughts are intentionally not sectarian or religious. I hope they have a universal human quality about them.
One problem with advance directives is that often they are not honored. It is critical that you have a good advocate who demands that you get only the care you want and do not get what is not wanted, not only at end of life but at any time you encounter a medical institution. You will need to choose someone who meets the legal requirements to act as a health care or medical agent, which some states call a proxy, surrogate, or representative. I call this person your “advocate.” State requirements differ greatly, so be sure to use your state’s forms for naming a health care or medical agent, not generic documents like the “5 wishes.”
Once ALS starts, it almost always progresses, eventually taking away the ability to walk, dress, write, speak, swallow, and breathe and shortening the life span. How fast and in what order this occurs is very different from person to person. While the average survival time is 3 years, about twenty percent of people with ALS live five years, 10 percent will survive ten years and five percent will live 20 years or more.
Following is my Supplemental Directive. I do not consider it to be superior to any other, nor do I suggest that anyone copy it, though everyone is welcome to use any of it that suits their needs. I offer it merely as an example of what can be done. Referring to posts 1 through 3 on this topic should clarify the reasons for my choices. You will judge how well I have resolved the issues. I welcome ideas, critiques, and comments to improve my efforts.
“Over himself, over his own body and mind, the individual is sovereign.”
— John Stuart Mill
The United States Constitution and the common law (along with some state constitutions) give us the right to make directives that control the health services we receive if we become mentally incapacitated. The instructions provided by most states in the statutory forms that have been approved since the late 1980s do not limit us. We can write non-statutory directives I call “supplemental directives” when they are attached to and referenced in the statutory directives. We can also write our own health care directives without using statutory forms (an issue to be discussed in a subsequent post).
In Part 1 of this essay, I introduced two competing arguments concerning using advance directives to control what is done to our bodies should we become mentally incompetent.
As explained previously, the sole purpose of advance directives is to record one’s decisions about medical and related care if a person becomes unable to make such decisions later because of mental incapacity. To explain the range of options that are available both before and after such incapacity, I’ll use a personal example.
With this post, I begin a multi-part series that suggests how one might use advance directives to hasten one’s death to avoid inevitable, intractable suffering or an unacceptable loss of dignity, when the option of direct self-deliverance is unavailable or unwanted.
Usually, when we talk about suffering, we are thinking of physical suffering. But there are many people with severe, unresolved, debilitating mental illness who can find no relief from their suffering – suffering that is just as real (though its cause is different) as that experienced, for instance, by a patient at the end stages of pancreatic cancer, or a patient dying of metastasized prostate cancer. And none of the existing programs and services can help those with unrelenting mental illness die a peaceful death – a good death – to put an end to their suffering.