Q: My mom asked me to be her agent on her Advance Healthcare Directive, and I am anxious about this responsibility. What do I need to know?
A: As a healthcare agent, you generally step in when the person is no longer able to make or communicate their own healthcare decisions. You are meant to follow the directions written in the directive, as well as any directions your loved one has told you verbally. If none are available, you make decisions based on their best interest.
It is important to take this time to talk to your mother about her wishes. Think about whether you feel comfortable honoring them. If not, this is the time to explain that to her so she can select another person who can follow her wishes.
Ask your mother questions about her values and her preferences for medical intervention. For example, does she want to be kept alive as long as possible with aggressive treatments, or is comfort care and quality of life more important to her?
Ask what quality of life looks like to her. It may mean recognizing loved ones, eating favorite foods, or being able to do certain tasks. What type of care does she want at the end of her life and where would she want to be?
Talking through these questions can be useful, but also emotional for both of you. Keep in mind that it is not necessary to define every specific need and situation. You are simply getting a broad understanding of her wishes and values.
I recently attended a presentation about advanced care planning. One of the speakers asked the audience if they felt that making healthcare decisions for someone was a life-or-death situation. Many people raised their hands.
He then shared that while some decisions can be life-or-death, many are actually about comfort, dignity, and quality of life.
He went on to explain that we cannot avoid death. It reminded me of the saying “no one gets out of this life alive.” This can feel like a shocking or harsh statement, yet we all know it is true.
Remembering this can help put your role as a healthcare agent into perspective and remove some of the pressure and stress associated with it.
The truth is that as a healthcare agent you are meant to act on what is called “substituted judgment.” This means you are not meant to make decisions based on what you want, but rather what you believe the person would want.
This is the best way to think about your role as a healthcare agent. You are following the person’s wishes and values, not your own. That is why it is important to have these conversations with your mother now, while she is able to express her wishes.
Serving as a healthcare agent for a loved one is a beautiful honor but can come with some stress. Having conversations early so you understand their wishes is a key part of reducing this stress. It will help take the pressure off you, as you are simply providing the voice when your loved one can no longer speak for themself.
If in having these conversations you feel uncomfortable with their wishes and have a concern that you cannot honor them without undue stress, then let them know. It is better for them to select another person who will be able to fulfil their wishes.
Martha Shapiro can be reached at Senior Concerns at 805-497-0189 or by email at mshapiro@seniorconcerns.org.
