As and estate planning and elder law specialist, I am often involved in unusual or unfortunate cases in which a person’s expressed wishes involving end-of-life decisions are not always met, even with an Advance Directive for Health Care in place.  One such case occurred about a year ago, in which I was an expert witness. I have attached an article that presents the details of the case and I urge you to read it through to the end.

While her court-appointed attorney correctly states that Nora did not specifically mention food and drink presented by hand, I feel it’s 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 scenario that could arise.  Nora did the best she could to ensure her wishes were known to Bill and then gave Bill the power to make those choices for her.

My guess is many of my readers are asking “How on earth do I keep this from happening to me?”  The answer is neither simple nor foolproof.  Nora and Bill clearly believed her Advance Directive was sufficient for Bill to make the choices he knew Nora would have made once the dementia was too far progressed for her to express them herself. 

In his book, Being Mortal, Dr. Atul Gawande discusses what he sees as medicine’s failing by simply trying to keep us alive as long as possible, 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 that can be 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; in Nora’s case, a life in which she was not able to feed herself, was not one worth living.

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 and when we want it.  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 very difficult exercise, to be sure, and one that is vitally important.

There are several resources to help us answer Dr. Gawande’s question, both locally and on the internet.  www.GoWish.org is a great place to start.  Their “game” can be quite helpful in prioritizing some of the issues that arise at one’s end-of-life.  Once the “game” is finished, 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 certainly take the language from it and incorporate it into our form, again as an attachment.  If you want an even deeper exploration into these questions, there are highly qualified people right here in the Rogue Valley who will work with individuals and help them put together an Advance Directive.

My final word on the subject is this: 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, learn everything you can about their wants, needs, and desires so that when you advocate for them, you can be certain that choices you make reflect the true desires of your loved ones.  As caregivers, it is our job to be the voice of those for whom we are providing care.  While, as in Nora’s case, 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.

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