As an estate planning and elder law specialist, I feel it safe to say that no matter how many specific things we list in our Advance Directives, we will not be able to account for every possible end-of-life scenario that could arise. What we can do is add as much information as possible to our Advance Directives so that anyone reading it is able to gain a clear understanding of what we want or don’t want.
In order for us to provide this information to our agents, we must first be clear in our minds about our end-of-life decisions. This can be a difficult exercise, to be sure, and one that is vitally important. In his book, Being Mortal, Dr. Atul Gawande discusses what he sees as medicine’s failing by focusing on the length of life without looking at the quality of that life. He feels (and I agree) the better question to ask is what we each feel is a life worth living. It may be that a shorter life spent in comfort and with one’s family is preferable to a longer one that is ridden with pain, or in which we are sedated to the point we are unable to be with our loved ones. Each of us will have a different answer to the question and it is important for each of us to explore that answer for ourselves.
There are several resources to help us with Dr. Gawande’s question, both locally and on the internet. www.GoWish.org is a great place to start. Play their “game” online and then take a screen shot of the cards laid out and include them as an attachment to your Advance Directive. The State of Washington has developed an Advance Directive designed for those diagnosed with dementia and, although we cannot use their Directive in Oregon, we can take their language and incorporate it into our form, again as an attachment. For those interested, there are highly qualified people right here in the Rogue Valley who will work with individuals in an even deeper exploration into these questions.
If you are a care-giver for someone (paid or not), if you work in a facility where people needing care depend on others to speak for them, learn about those you are charged with protecting and truly advocate for them. Look at their Advance Directives; speak with their family; speak with them if possible, learn everything you can about their wants, needs, and desires so that when called upon, you can be certain that choices you make reflect their true desires. As caregivers, it is our job to be the voice of those for whom we are providing care. While we aren’t going to be able to identify every possible variable that may affect end-of-life decisions, we can thoughtfully consider and discuss what factors and situations would merit being covered in our Advanced Health Care Directives.