I have come to realize that patients and actual treatment providers may be thinking very differently about advance directives, and that therefore it is particularly critical that these documents — or rather the templates that are used, be designed in close partnership. between patients and providers
For the providers, the question they face is usually very treatment specific — typically something like: “do I turn off this machine now?”
For patients, the issue presents very differently focused on particular anticipated circumstances: “what do I want done when I can not eat?”
So, look, for example, at this question from the Maryland MOLST document.
While some of us may think this second way, I think most of us come at it rather from the direction of, “what do I do when then the pain becomes too much?”, or “how do I guarantee that I am not left unable to say that enough is enough?”
I totally understand that given that the role of the MOLST is to ensure that specific decisions are made in accordance with the patient wishes, that often those decisions are made under time and emotional pressure by first responders with limited training, such treatment specific instructions are needed. Otherwise treatment will tend to continue, regardless of what the patient wants.
But, if you have ever tried filling out the MOLST, or I suspect equivalent documents in other states, you will find that you are constantly fighting its categories, and wanting to add more and more detail, when allowed.
Given these differences in perspective between patients and providers, let me suggest that we need software that walks a patient though questions, and based on those answers, generates the directive.
However, the questions must be structured the way the patient thinks, laying out circumstances, and offering choices. The software then restructures those into a set of formal directions that are treatment specific, like in the MOLST. Obviously then the patient reads and signs thee derived directives document.
I hope it is obvious that such software needs, and accompanying materials, need to be developed in close partnership between providers and patients.