31 Jan Ask Alice February 2022

ASK ALICE

Dear Alice,

A friend has convinced me to do an advance directive.  She didn’t tell me what form to use, though, and there are so many options online!  Some are detailed and go into lots of specifics, others are more general, and some leave a lot of blank spaces to fill in.  Which form do you think is best?  All of them have an appointment of agent section, and I realize that is very important.  But other than that, what do you think is the most important part to include?  

             Thanks,  Convinced but Formless

Dear Formless,

Yes, it’s wonderful to have lots of forms to choose from, but it can be confusing as well.  The easiest approach, of course, is to call us at Taking Steps Brattleboro and let one of our volunteer facilitators provide a form and walk you through the process.  But in case you can’t or don’t want to do that, I will give you my thoughts on the matter. 

The main thing to remember is that the form itself is not that important, as long as it has a signing and witnessing section that meets your state’s requirements.  Rather, the form is a tool to guide you through what is important – your process of thinking, talking, and writing down the things you love about life; your general values, concerns, and fears; and your inclinations or preferences about health treatment decisions that might come up if you have an unexpected accident or illness and can’t speak for yourself.  Since we are all different and at different points in our lives, there is no “best” form for everyone.  A lot of them have good features, and you can always add to or leave out sections as you wish.  

That said, here at Taking Steps Brattleboro we generally use the “Short Form” developed by the Vermont Ethics Network (“VEN”) for most of our clients.  See www.vtethicsnetwork.org.  It covers a lot of topics that many people would like to cover, probing general feelings and values as well as specific preferences about common health care treatments.  Yet, at the same time, it is not so lengthy that it becomes overwhelming or daunting for most people.  Moreover, since the VEN Short Form is the standard for use in Vermont, it has the added benefit of being familiar to most hospitals and practitioners in Vermont and the surrounding states, making it easier and more efficient for them to consult.  (For younger, healthy people, VEN has an even shorter Appointment-of-Agent form that we use, and it does just what it says – appoints someone as an agent if the patient cannot speak for themselves, without going into detail about the patient’s values and preferences.)  You can get these forms from us, or you can access them in the Forms section of the VEN website. 

Your question about the most important part of the form is an interesting one, and the answer is somewhat ironic. The irony is that based on conversations with practitioners, what they find most helpful is not the specific answers to specific questions on the forms, but instead the more general statements and personal narratives their patients added to their AD forms, either in the blank sections provided or on a separate addendum sheet.  

Why?  I think it has to do with “patient-centered care,” a very positive trend in which medical practitioners focus on the individual patient’s health care needs based on their interests, fears, and where they are at in life.  This allows practitioners to treat the patient as a whole person, rather than simply treating the particular disease or condition the patient is suffering from.   Patient-centered care is an approach to health care at all stages of life; and those personal statements in ADs allow practitioners to use this approach even if they did not previously know the patient and cannot get to know the patient when the care is needed.  It is true that your agent will be making the decision, and your agent may already know the information in the personal statement.  But the agent will be making decisions based on what the practitioners have discussed with them, and the better the practitioners know you, the more meaningful and useful those discussions can be.

I understand that forms with questions have been created to make a difficult process easier, and adding a personal narrative makes it a bit less easy. Adding a personal narrative may be worth thinking about, however, and it is another thing we can help you with at Taking Steps Brattleboro.  

Best wishes,   Alice    

Please contact Ruth Nangeroni, Taking Steps Brattleboro Coordinator, 802-257-0775, ext. 101, or ruth.nangeroni@brattleborohospice.org, for information about Advance Care Planning.

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