29 Apr Ask Alice May 2021

Dear Alice,
I’m hoping you can assist me with concerns that have been troubling me since my Mom recently asked me if I would be her “Agent” on her Advance Directive. I am concerned because I have a family with very strong opinions about matters of End-Of-Life and what choices one should make when thinking about medical treatment options. Five years ago when my grandfather was admitted to the hospital with kidney disease, I remember my Mom who was his Agent had to fight with his brother and sister about what treatments he should have during a hospital admission. I’m concerned that I will have similar challenges if I have to make similar decisions for my Mom. What should I consider before agreeing to be my Mom’s Agent?
Sincerely,
A loving daughter

Dear Loving Daughter,
You have touched on one of the most important questions a person faces when completing an Advance Directive for healthcare-who to choose as an Agent? It is most important when considering who will be your Agent to ask this question: who will be best able to clearly convey my wishes for medical treatment if I am unable to speak for myself during a medical event? The Vermont Ethics Network (www.vtethicsnetwork.org) has available on their website a booklet: “Making Medical Decisions for Someone Else” that is an excellent resource to learn about your responsibilities as your Mom’s Agent and how to address family dynamics. Your job is to “make medical decisions consistent with what the person would decide if they were able”. The booklet discusses many responsibilities including:

*getting the same medical information the patient would get
*talking with the medical team
*asking for consultations and second opinions
*consenting to or refusing medical tests or treatments
*getting the medical team to communicate with the patient if the patient is still able to understand information.

Most importantly, it is your responsibility to learn as much as possible as early as possible about “what matters most to your Mom if she becomes seriously ill”. This means having conversations about her values and priorities BEFORE a medical crisis. As your Mom’s Agent you play a vital role in deciding “goals of care” for your Mom in the event she isn’t able to make her own decisions. Having an Advance Directive provides a road map for a medical event journey that is subject to roadblocks and detours that cannot be totally predicted when your Mom completes her Advance Directive. Therefore, it is very important for you and your Mom to frequently discuss her values, religious beliefs, past decisions and past statements. Be very clear that you are comfortable being there to express HER wishes and NOT YOUR wishes for her treatment. However, if you do not have the answer to a specific question, your job under the law is to do what you believe to be best for your Mom given what your Mom has shared with you.

As your Mom’s Agent in a valid Advance Directive, you may consider the opinions of others (including family members), but you have the final say and always remember your ultimate duty is to your Mom. Given this, it is very important that your Mom also share her wishes with other family members to avoid disagreements during a medical event. Making sure your Mom has clearly expressed her wishes to her family about how they should receive information about her condition and how they can provide input can be very helpful to avoid family disagreements when family members are under stress during a medical event. Making decisions that others may not agree with can be challenging. Know that there are resources to assist you when there is a disagreement you cannot manage. These include: understanding your legal authority, keep family informed, if appropriate; use key communication tools, ask for a care-planning meeting, ask for an ethics consult, ask for a palliative care consult, and/or consult a hospital chaplain. The National Hospice and Palliative Care Organization (NHPCO: www.caringinfo.org ) provides many informational resources.

As I frequently indicate in my column, if anyone would like assistance with starting an Advance Care Planning conversation, Taking Steps Brattleboro (TSB) is available to you at no cost. Many find attending the weekly Zoom Advance Care Planning Information meetings held each Wednesday at 10 am and 6 pm to be a great way to begin working towards completing an Advance Directive and understanding the role and responsibilities of an Agent. If anyone would like to begin meeting with a TSB volunteer by phone or Zoom (in-person: following COVID safety guidelines) or to request the Zoom invitation for the Wednesday meeting, please contact Don Freeman at 802.257.0775 ext 101 or by email don.freeman@brattleborohospice.org.

As your Mom’s Agent during a medical event, where one’s medical condition can change quickly it is important to find the medical treatment team member who can best keep you informed about how your Mom is doing. Stay involved, ask questions and make sure the medical team and family members continually hear from you during the medical event what your Mom’s choices and values are to achieve her best interests.

Best wishes,
Alice