29 Jul Ask Alice August 2021

Dear Alice,

I am in my sixties and in the process of trying to do my advance directive.  I understand the importance of getting this done, but I am feeling way more daunted by the task than I expected. Pondering all the possible scenarios to decide what care I would want in the future is so difficult!  How can I know what kind of shape I will be in when I’m 80 or 90?  How can I know what will be important to me, and thus what I would want, many years from now?

Thanks, Daunted  

Dear Daunted,

Your concern is a common one, reflecting a common misconception that the advance directive (AD) you create now will determine the care you receive many years down the road.  If this were true, the need to consider all the possible scenarios and issues would indeed be overwhelming, and very few of us would ever get our ADs done.

Fortunately, however, this is not the case.  Instead, the creation and registration of your AD is just the beginning of your advance care planning process.  It is expected that over the years your health, your circumstances, and your preferences will change; and your AD will need to change along with them. (For a description of how easy it is to change your AD, you can see last month’s “Ask Alice” column.) 

Thus, when you fill out your AD, don’t try to anticipate what your health, circumstances, and preferences will be in the distant future. Rather, your AD is for now, or at least the relatively near future.  So if you are a healthy sixty-something, focus on what you would want if you have a sudden neurological event or bad accident and cannot speak for yourself  tomorrow, or at least in the relatively near future, based on your health, circumstances, and values now.

So how do you know when it’s time to consider changing your AD?  The standard wisdom is that you should think about changing when any of the following “5 D’s of Advance Directives” occur.

First, you will want to review your AD whenever you experience the Death of a loved one.  You will obviously need to change your directive if the loved one was your chosen agent, but even if they were not, going through the process of their death may have affected the way you look at life and health care choices.

You will also want to consider changing your AD if you receive a new Diagnosis of a serious health condition.  The diagnosis may allow you to make your choices more informed and specific, and may also affect the way you think about what is most important to you.  Moreover, as an added benefit, the process of rethinking your choices may help you frame your questions to your clinicians (or other research you do to learn about your new diagnosis) about what you can expect.

Similarly, you will want to ensure your AD continues to reflect your wishes if you experience a significant Decline or deterioration in your health condition, especially if your ability to live independently is impacted.  This would include a diagnosis or decline related to dementia, in which case you might want to consider a new AD that includes one of several available addendum forms addressing dementia issues specifically.   

Divorce is another major life event that will generally necessitate a new AD, particularly if the former spouse was your chosen agent.  Even if none of your choices need to be changed, it wouldn’t hurt to go ahead and sign a new AD to reaffirm those choices, so that no one has to wonder if they are still valid post-divorce should the need to rely on your AD arise.

Lastly, it is said that you should review your AD when you reach a new Decade of life.  I would consider this as a minimum, for those individuals who begin their AD process in their 20s and 30s.  For the rest of us, a review every year to five years is recommended.  And if you register your AD, the registry will send you an annual review reminder.

I sincerely hope this makes your advance care planning process less daunting.  And if you want to make it even easier, give Taking Steps Brattleboro a call and set up an appointment with one of our volunteer facilitators.

Best wishes, Alice

As always, please contact Don Freeman, Taking Steps Brattleboro Coordinator, 802-257-0775, ext. 101, or don.freeman@brattleborohospice.org, for information about Advance Care Planning.

Till next month, folks. Please send your questions to Alice via info@brattleborohospice.org.