30 Sep Ask Alice October 2021

ASK ALICE

Dear Alice,

I have been meaning to do my advance directive for a while, and a friend referred me to Taking Steps Brattleboro for help in finally getting it done.  I do plan to call, but I’m just wondering – why is your organization called “Taking Steps”?  Isn’t it just the one step of getting my advance directive done?   What other steps are we talking about?

                   Thanks,   Taking a Step

Dear Taking a Step,

That is a great question, and one we can answer in a couple of ways.  The first focuses on where individuals are when they start the advance care planning process (ACP).  We often say that everyone eighteen or older should engage in ACP and do an advance directive, because an unexpected accident or illness can strike at any time.  It is obvious, however, that a 20 year old, a 50 year old, and an 80 year old will not have the same need or ability to contemplate, talk about, and plan for future medical decisions.  And even people of the same age will differ in this regard.  In other words, people start advance care planning at different stages in their lives, and the steps they take to embark on the ACP process will differ accordingly.

Fortunately, the terms “advance care planning” and “advance directive” are flexible enough to encompass a broad range of conversations and documents.  Even better, the Vermont Ethics Network (VEN) has developed several different forms to guide conversations and document individuals’ choices and values in greater or lesser detail.  Indeed, even with the same form, there is great flexibility with respect to the degree of detail the individual can provide.

For example, an individual who recognizes the need to choose a health care agent but is unable or unwilling to think or talk at length about their desires and values (often but not always a younger person), can take STEP 1 by filling out and executing an Appointment of a Health Care Agent Form.   In VEN parlance, the tag line for this step is “Who’s Your Person?”  

Other individuals will have stronger feelings about what future treatments they might choose to accept or reject, either because of personal experiences they have had or personal values they hold.  They realize that talking about and documenting these feelings, experiences, and values will not only make things easier for their agent (and other loved ones), but may also increase the likelihood that their agent will make the choices they would choose for themselves should the need arise.  These folks will be at Step 2, and they will choose either the Short Form or the Long Form advance directive.  In these forms, they choose an agent and also provide information to guide the agent’s choices, including specific desires about specific treatments and more general desires based on more general values and preferences.  (Most people will use the Short Form; the Long Form is generally used for individuals with a history of mental illness or a particular disability or chronic disease that enables them to get even more specific about the particular types of treatments they would or would not want.)   Because these forms not only name the agent but also provide additional substantive guidance for the agent, the tag line for Step 2 is “What’s Your Plan?”  

The advance directives discussed above are legal documents if they are properly signed and witnessed.  Because they are not medical orders signed by a clinician, however, they may not be enough to ensure that a preference to limit life-sustaining treatment will be honored in all settings.  Specifically, a medical order signed by a clinician is required for emergency medical technicians to withhold CPR, and without it, CPR will be attempted even if you say you don’t want CPR in your advance directive.  Thus, people with serious, advanced, or life-limiting medical conditions; people who might die within the next year; or people who are certain that they would not want life-sustaining treatments under any circumstances should consider talking to their clinician about having a DNR/COLST (Clinician Order for Life-Sustaining Treatment) Form done.  This is Step 3, with the tag line “Are There Limits?”     

Although we include the DNR/COLST as Step 3 in the VEN advance care planning framework, it is important to note that it is not an advance directive and does not replace or negate the need for an advance directive.  Rather, it supplements and strengthens the advance directive signed by the patient with a binding medical order signed by a clinician.  If you are interested in finding out more about DNR/COLSTs and how they differ from ADs, you can take a look at the ASK ALICE column in the December 2020 newsletter.

The second way to answer this question focuses not on where individuals start the ACP process, but on the fact that it is a process — no matter which step you start at, advance care planning continues throughout your life; it’s not just a matter of getting your advance directive done and that’s it.  It obviously gets a lot easier once you take that first step.  But your experiences, desires, fears, and values will continue to change throughout your life, and you will need to periodically take steps to make sure your AD continues to clearly and accurately reflect them.

Hope this helps,   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.