What is a family member's role in helping someone who has a terminal diagnosis? This question was recently put to me by a patient who is at odds with her family about how they can best help her as she struggles with facing her mortality while also wanting to live life as long as she can.
This patient, who I will call Susan, is frustrated by the way her extended family is acting in light of her prognosis. Susan said that she had told them that she did not want them discussing "her condition" behind her back and also wanted them to try to live their lives in as uninterrupted way as possible, even though they knew that she would most probably die sooner rather than later. She wanted to control how they were reacting to her.
Some members of her family and extended family were angry with Susan that she placed these parameters around her disease and how they were to discuss it. Were they "rightfully" angry?
Susan's request may sound unusual and it may sound harsh, but in light of the fact that she is the one who is ill, she feels that she has the right to "control what she can." As she said to me, "I can't control my disease, but I can control how others react to it and to me."
In reality, Susan can't control what is happening in her body, so she needs to control what she can, and so she is trying to control how others handle her disease ... at least as far as it concerns how they will deal with her. She wants them to maintain certain boundaries and control how they talk about her when she is not in the room. While her family members may choose not to do what she has asked them to do, Susan doesn't want them talking about her behind her back. She doesn't want them speculating on "how long" she has left or what anyone might have noticed about how her disease is being manifest. She wants to be the one to let them know what she wants them to know and when she want them to know it.
Is this so wrong? In the "What Would Jesus Do" realm, what do you think Jesus would have done had Susan put these parameters on him? Would he have abided by her wishes? Would he have listened to her need to control what she could and honor that? Or would he have tried to get her family to counteract her wishes and find ways to talk with each other "behind her back" about her disease progression so that they could all be "on the same page" and know things that Susan didn't want them to know? What is our responsibility to those we love when they ask us to do or not do something that impacts them directly in a way that they perceive is negative?