29 Nov Ask Alice December 2021

ASK ALICE

Dear Alice,

A friend has recently asked me to be her health care agent.  I am inclined to say yes, but I want to find out more about what is involved.  There is a fair amount on the internet about how to choose a good agent, but not as much about how to be a good agent.  Can you help me with this, or at least point me in the right direction?

 Thanks,  a Potential Agent     

Dear Potential Agent,

Congratulations!  It is truly an honor to be asked to be someone’s health care agent, since it shows her trust in your ability to understand her values and make critical decisions on her behalf.  It is certainly normal to have concerns or be nervous about being a good agent, but be assured there is no such thing as a perfect agent.  No one expects you to be perfect – they only expect you to do your best.  

So how do you prepare to do your best?  As a first step, you need to understand why agents are necessary and just what they do.  Except in an absolute emergency, medical personnel must obtain a patient’s consent for any and all medical treatments.  If the patient is incapable of giving or withholding consent, it is the agent’s responsibility to step into the shoes of the patient and give or withhold consent for them.  To do this, the agent has the right and the responsibility to access all of the same medical information the patient would have access to, including the patient’s medical records and any other pertinent medical information relating to the proposed treatment, possible outcomes, possible side effects, and possible alternatives.  The agent needs to ask questions and get explanations from doctors and others, and sometimes may need to be pushy or persistent.  The agent does this as if they were the patient, but they make the decisions and choices for the patient based on the agent’s understanding of what the patient would choose for themselves if they could, even if that means going against the way the agent would decide for themselves.

And how do you know what the patient would decide or choose?  This question leads us to your second step, which is to learn as much as you can now about your friend’s values and preferences.  If your friend has not already done so, set up a time to talk about what matters most to her in her life, and in her care through the end of her life.  What does she fear the most, and what is most important?  If she has or is working on an Advance Directive, go through it with her and make sure you understand what she means.  Ask questions.  Realize that some specific wishes may not be possible under the circumstances, but if you know the general values underlying those specific wishes, you may be able to look for an alternative that honors at least some of those values as much as possible.  For example, your friend may say in her AD that she wants to spend her last days at home, but it may turn out she cannot be kept comfortable in her home.  If you know why it is important for her to be home rather than in a facility, (e.g., it is important that the environment be quiet and peaceful, that she can have her pet with her, and/or that loved ones can freely come and go), then you can accept that she needs to be in a facility but try to find one that meets as many of these criteria as possible. 

There are a number of organizations with tools to help you have these conversations and be a good agent.  We work closely with the Vermont Ethics Network (VEN), which publishes a handbook for agents called “Making Medical Decisions for Someone Else.”  At the back of the handbook, Appendix A is “The Medical Decision-Maker Quiz: A Tool for Better Understanding,” and this could be a good way to start the discussion with your friend.  To access the VEN handbook online, start on the VEN homepage and click on “Medical Decision Making.”  Then, under “More Topics in Medical Decision-Making,” you can click on the VEN handbook for agents, as well as a shorter publication of the Conversation Project called “Your Guide to Being a Health Care Proxy.”    

Of course, you can also call us at Taking Steps Brattleboro, and we can help you and your friend discuss, clarify, and document her wishes, whatever stage of the process she is at. 

I hope this helps.   

                       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 .