Decision Making at the End of Life

A unique thing about our medical system is the value we place on autonomy.  This is in contrast to the old system of paternalism which meant doctors made decisions based solely on their idea of what was best for patients.  The pendulum has swung, and now patients are considered to have the final say.

The idea of autonomy is extremely crucial in end of life decisions. This next story should illustrate that.

I took care of patient during my medical training that was on a ventilator in the intensive care unit. The elderly patient had a traumatic brain injury and was unconscious and stuck on the breathing machine.  Our team turned to the family for guidance on how to proceed.  The choices were to either remove the breathing tube or place a permanent tube into his neck so the ventilator machine would keep him alive, though unconscious, for the rest of his life.  Like most, the patient hadn’t talked to his family about his wishes in this situation.  The family was torn, passionately arguing both options. We had to respect autonomy and couldn’t make the decision for them. The family finally decided to put it to a vote. My patient’s life or death was left to a tally from folded scraps of paper with scribbled yes’s and no’s.

To prevent this from happening to you, there are a couple options to consider. The first is an advance directive, otherwise known as a living will. Think of this as a preemptive decision. Usually living wills are a list of things you don’t want to happen to you if a certain thing occurs.  For example, “If at any time I should have a terminal disease it is my desire that my dying not be prolonged by artificial nutrition.” These forms are sometimes in written paragraphs, and other times a check list of things wanted or not wanted. In Kansas this paper must be signed and dated by two unrelated witnesses.

There are criticisms of advance directives; the language at times is too narrow, so only in a very specific situation is the document honored. Location can also be a problem; often it is lost or locked up, so no one can find it to honor the previously made decisions.

The other option in decision making is choosing a surrogate. This is known as a DPOA or durable power of attorney. Choosing a surrogate places the responsibility on them if you are unable to communicate for yourself.  The hope is that you’ve either communicated your wishes with the surrogate, or they know you so well that you trust them to make good decisions for you when you cannot. Some people choose multiple DPOAs. There is no limit; however keep in mind that conflict can arise if the DPOAs have different opinions on your wishes.

If none of these are available, we will still seek family’s input if you cannot speak for yourself. The greatest gift then, is talking about your wishes with someone. That’s actually a good way to start, “You know when I am at the end, I wish…” Otherwise it may just be put to a vote.