It is important to know where the patient and family are starting from when you initiate a goals of care conversation. Otherwise it’s like trying to find your way across town without a map. They may have information or beliefs that you need to know in order to help.
Remember, this may be the first time anyone has asked them to discuss these questions.
There may be different even conflicting goals of care. It is important to give everyone involved — patient and family — a chance to say what they want. Goals may be based on misinformation or denial — however until everyone is “using the same map” it will be difficult to move forward. Patients and family look to you to provide information and guidance — but mostly to listen.
- Watch the video below for an example.
Ask patients and families permission to discuss these topics. This provides a nice way in to the subject, and gives families permission to say “no”. Most don’t say no, but may say something like “let’s wait until my sister arrives…”, etc.
Also ask about information preferences, or in other words, how much information about what is likely to be ahead would the patient like to know at this time?
What You Can Do
You can provide information about the current situation, the underlying disease, prognosis. Families are often surprised to learn that a bed-bound person with advanced dementia now with sepsis will probably not “get better.” Provide information in short chunks, pausing often to check understanding.