Helping the Family Make the Difficult Decisions

Doctors tell me all the time that they struggle with families that aren’t respecting the patient’s wishes or are not making wise decisions for their loved ones. Over the next months, I will give you many techniques you can use in these situations. Here are two to help you begin.

A dear friend of mine was sitting at the bedside of his wife after her massive stroke. They had been married for over 50 years. As I sat with him he said to me, “The doctors keep asking me what I want them to do. Well, what I want is for them to keep Ruth alive no matter what.” I nodded and listened as he continued. “If they asked me what Ruth would want, she would say, “Let me go, I don’t want to live like this. But the doctors don’t ask me what she wants, just what I want.” I was so surprised that in his grief he understood the difference.

So here are two techniques you can begin to use to improve end of life decision conversations. First, stop asking, “What do you want us to do?” And instead ask, “What would (the patient’s name) want us to? What would (the patient’s name) be telling us to do in this situation?” And if the family member responds, “What I want is …” you stop them and re-clarify that they are supposed to speak as if they are patient. You can always use the classic question, “If the patient was able to wake up for 5 minutes and understand what was going on, what would the patient say?” The trick is to keep silent after the question and let the family member struggle with the question. The silence in the room helps the person understand the significance and the weight of the question. Don’t rush them as they haven’t been thinking about what the patient would want; only what they would want.

Secondly, you need to educate the family about their role as the decision maker early on. Explain to them that they are supposed to make the decisions based on the patient’s values, not what they would want. Tell them that they are supposed to speak with the patient’s voice and wishes, even if it’s hard to do. I think we need to acknowledge how difficult this job is for the family member and to validate their struggles. “I know this must be very difficult for you, but it is important that we respect your loved one and follow their wishes.” If we can begin the conversation with the right questions and to educate families regarding their role, it will provide a good beginning to improving end of life communication. More to come on this topic later.