How do we get doctors to honor our wishes at the end of life? Most recommend preparing an advance directive, and I’m no exception. These documents are not infallible, but they are the best things we’ve got going for us when we can’t speak for ourselves.
There are two general kinds of advance directive. One is called a “health care proxy” or “power of attorney for health care” and it delegates a person to make decisions on your behalf. The other is a “living will,” which specifies your wishes. Anti-choice activists keep tightening the rules of evidence that govern end-of-life decisions, so you need both documents. One names the decision-maker. The other guides the decisions.
Most people use their state-approved advance directive form, and these are the most trouble-free and reliable. But the widespread form called “Five Wishes” should come with a warning label. Why? Because the religious dogma imbedded in it could actually subvert your wishes when the time comes.
In 1997 James Towey started a Florida organization called “Aging with Dignity” and wrote “Five Wishes.” With the help of the Robert Wood Johnson Foundation and others, Five Wishes spread across the country. Aging with Dignity claims more than 15,000 organizations distribute Five Wishes, and most of them probably do not know about the religious slant. Many people now have these on file, instead of their own state forms. Five Wishes is a wonderful form in many ways, but fair warning is in order.
Five Wishes incorporates the religious creed that while it is permissible to take action you know will cause death, it is never permissible to intend death. It’s a subtle concept, but central to certain theology related to the end of life. It carries the name “doctrine of double effect.”
Those of us trained in the law usually assume responsibility covers things we know will result from our actions, in addition to what we intend. “I didn’t intend to break the window” is no defense if I knew the window was closed and chose to throw a baseball to my friend outside anyway.
The double effect dogma can trip you up if you don’t see it coming. Wish Number 2, “My Wish For the Kind of Medical Treatment I Want Or Don’t Want,” includes the general instruction “I do not want anything done or omitted by my doctors or nurses with the intention of taking my life” (italics original).
Then the form goes on to list medical interventions that keep a person alive and allows you to check the box, “I do not want life-support treatment.” Thus it creates internal conflict within the document.
Even if you check the “do not want life-support” box, a hospital or doctor could object that stopping life support would “intend” death and the form you signed expressly prohibits that. What a confusing mess that could create!
The Five Wishes form is simple and easy to use. It avoids the legalese that makes forms written by legislatures so tedious and opaque. It also includes things you might never think to include in your “wishes,” like the wish to be rubbed with warm oils as you die, or be soothed with a cool cloth. Also, Five Wishes wisely includes brain damage (that would include dementia) along with terminal illness and coma, as a condition that triggers your instructions about life-support treatment.
But Towey makes no secret of his desire to spread the tenets of his Catholic faith and encourage others to live by them. When he left Florida to lead faith-based initiatives at the White House he described his goal unabashedly as to “get into heaven.”
My advice — use your own state forms. You can download them free in an editable PDF format, along with instructions and useful additions to the form, at the Compassion & Choices Web site. The new format eases the completion of an advance directive.
If you have already filled out Five Wishes and want to keep it instead of changing to a state form, consider crossing out the part that does not allow an intention to end life. The Five Wishes form itself instructs you to cross out portions you don’t agree with. (That instruction somehow went missing from the stealth anti-choice part.)
You can cross it out anyway. Initial and date the cross-out. Congratulations. You have just transformed a fish back into your own, personal end-of-life wish.