The whole goal behind Plan Well Guide is to help people clarify their values, provide information about the differences between ICU care, Medical care and Comfort care, and transparently connect one’s values to medical treatment options when they are seriously ill. When I think back to how the first 1,000 users had gone through the Plan Well Guide serious illness planning process, I was dismayed that there were approximately 20 users that, when asked what their final preferences were, said, “Unsure.” Moreover, a significant proportion of users that start the Plan Well Guide planning process don’t complete their ‘Dear Doctor’ letter. I continue to think about this and ask myself, why?
As the creator of Plan Well Guide and being passionate about helping people plan, I took these findings as a personal failure. I need to know ‘why’ so I could redesign our content and workflow to eliminate this doubt and insecurity. I emailed those users and talked to a number of our new users and have come up with two explanations, which are that:
One, some users continue to think they are making a decision today for some future health condition and they don’t want to answer the question without knowing how they are going to turn out. “If I am going to turn out fine, then I want you to do everything for me. If I am going to turn out poorly, then I want you to just keep me comfortable.”
I have tried to communicate that with serious illness planning, we have to state our informed preferences without knowing the outcome. I have now added the following content to Plan Well Guide to further emphasize this point:
Two, some users have ‘decisional anxiety’. By this I mean, they don’t want to make a commitment to one treatment pathway or another for fear they make a mistake. Their fear of getting it wrong leads them to shy away from answering the question and therefore abandoning the planning process or they just answer ‘unsure’ to the final preference question hoping that when they get seriously ill, things will become clearer or things will work out.
However, as many of us know, this isn’t how it works. It is likely you would be unable to speak or even think when you are seriously ill. This is why it is so important that you get the medical care that is right for you,to reduce the stress on the family member that has to make decisions on your behalf.. I want to acknowledge this anxiety which is why I have added the following content to Plan Well Guide:
What do you think about this new content? Does it alleviate some of your concerns or resolve some misunderstandings? I am very open to feedback on how we can improve our content or visuals. I want you to be ‘sure’ of what is right for you and to have communicated that in advance to your Representative, so you are more likely to get the medical care that is right for you when seriously ill with the least stress on those involved in the decision. Feel free to email me by clicking here, if you have other feedback on our serious illness planning tool.
P.S. The information shown above is new material meaning it is not currently available on the website However, it will be brought into the website in the coming months as we continue to make updates to our website.
