30 Mar Ask Alice April 2021

Dear Alice,
I am healthy and in my early twenties, but my mom is nudging me to fill out an Appointment of Agent Advance Directive form, naming a person to make medical decisions for me if I have an accident or illness and can’t make medical decisions for myself. I guess her suggestion makes sense, but as far as I know none of my friends have done this, and I’m hesitant to be the first. I’m curious, though — what generally happens in such a situation if the patient hasn’t named a decision-maker? Wouldn’t the doctors just consult the closest relative, which is probably who I would choose anyway?
Sincerely, Curious but Hesitant

Dear Curious but Hesitant,
If only it were that logical and straightforward! Alas, it is not.

Once again, a little historical background might help. By the 1970s, it was accepted that patients had the right to provide or withhold consent to medical treatment. But it was also apparent that in many situations, patients who needed to make a decision to provide or withhold consent were incapable of doing so. Thus, various forms of advance directives were developed, allowing patients to, among other things, appoint an agent to make treatment decisions for them if necessary.

Nonetheless, by the end of the 20th century, it was undeniable that many if not most patients still did not have advance directives and had not specified who their substitute decision-maker should be. Accordingly, state legislatures gradually created statutes authorizing clinician reliance on default surrogates, family members or friends who would serve as substitute decision-makers in the absence of a health care agent named by the patient (or a legal guardian authorized to make health care decisions).

The statutory authorizations for DEFAULT SURROGATES vary a lot by state, in terms of both (a) the scope of medical decisions they cover, and (b) whether and how they prioritize the family members and friends available and willing to serve as a surrogate. And Vermont’s is one of the more limited ones. For example, Vermont’s statutory recognition of default surrogate decision-making is basically limited to decisions about DNR/COLST orders. (There is also a separate provision allowing a family member or other person with a known close relationship to the patient to elect hospice care on their behalf if there is no agent/guardian or the agent/guardian is unavailable.) This leaves a lot of potential decisions about treatments short of DNR/COLST orders or hospice without any explicit legal authorization for default surrogates.

Moreover, the Vermont statute provides no prioritization of family and friends for the patient’s clinicians to turn to. Instead, it directs them to make a reasonable attempt to notify all reasonably available “interested individuals” of the need for a surrogate, and defines that group broadly, without any hierarchical ranking, to include the patient’s spouse, children, parents, adult siblings, and adult grandchildren, among others. The size and breadth of this group is a potential issue because a consensus of this group is required: The clinician can only rely on the surrogate’s decision if the surrogate confirms that all interested individuals agree on the decision to provide or withhold consent, and/or on the choice of the surrogate. Otherwise, one of the interested individuals may have to go to Probate Court and become a guardian.

Bottom line – if you don’t appoint an agent, you may end up with the person you want making decisions for you anyway, but it is far from certain. And even if you do, there will have been unnecessary stress and angst for your loved ones, delays for your treatment, and hassles for your doctors.

To find the “VT Appointment of Health Care Agent” form you asked about (2 pages, quick to complete) go to www.vtethicsnetwork.org or contact Taking Steps Brattleboro for assistance.

So why not do it? And tell all your friends – maybe you can start a trend!
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.