For more than five years at Vital Decisions, I have been working with individuals and their family members to build and improve their ability to communicate, and to understand what is important to them as it relates to advance care planning. You may be thinking: “Communication?! That’s so simple – how hard can that be?” But the surprising reality is that there are many communication barriers that present themselves when a person ages and when health is on the decline.
Often, communication barriers come from personality traits: They’re not “talkers”; they are in denial about their declining health, they think they have everything covered, or there are cultural factors that contribute to gaps in communication, and important conversations never happen.
I once worked with the daughter of a patient in an advanced stage of illness. Maria, the daughter, was very concerned about her mother’s health. Her mother, Susan, was 77 years old and hospitalized with diabetes and uncontrollable high blood pressure. Maria realized that her mother’s health was drastically changing.
Although she knew it would be difficult and uncomfortable, Maria knew she needed to have important discussions with her mother regarding Susan’s preferences and those “what if” emergency scenarios that might present themselves. Maria worried that she would not know what to do for her mother -- and what her mother would want her to do for her. This was very important to Maria; she did not want to feel guilty about doing something that she would feel was “wrong” or going against her mother’s wishes.
Through discussions, we uncovered that culturally, Susan was not comfortable talking “what if” situations, because she felt talking or preparing would increase the likelihood that it would happen. Susan was extremely fearful and somewhat in denial about her health, and she had a strong will to continue living the way she always had.
Using the Living Well, Maria and I explored ways to understand her mother. I was there to support Maria, and Maria used Living Voice program to tap into her mother’s values, including
- what was important for her daughter – and her doctors – to know,
- how she wanted to receive medical information, and
- what she would want and would not want if she were unable to speak for herself or make her own medical decisions.
Because of Living Well & Living Voice, Susan and Maria’s stories have very different outcomes:
- Susan’s values were identified
- Susan expressed her preference for receiving medical information: She wanted to be fully informed no matter what the situation
- Susan asked for the assistance of her daughter Maria in making medical decisions
- Susan’s top priorities became known: Ensuring her mentally disabled son is taken care of. The son will be moving in with Maria when the time comes.
- An advance directive was created which documented all of Susan’s wishes
- Maria’s anxiety decreased. Maria knows and understands her mother’s wishes and feels comfortable to be able to follow through with her mother’s wishes. She knows she will not feel guilty since her mother has given her permission and guidance with all they have discussed