I’ll Tell You What I Want, What I Really, Really Want

If your spouse or parent or adult child was dying and you had to make decisions, would you be able to say what they wanted, regardless of how your heart was feeling?  Could you really speak for them in the moment?

When a patient is unable to speak for themselves and their family is having a difficult time making medical decisions, I will ask them to tell me about their family member.

I start with a general question, “tell me about your wife”, I get a glimpse into their life, and then dig a little deeper to hear about the kind of person they are outside of the hospital setting.  Are they committed to their business; focused on the children; caretaker to everyone else in the family; or drifted away and a bit of a loner? Learning about the patient, through the family, reminds them of who that patient really is and what they believed and stood for through the actions they took in their life, which can then help them make choices from the patient’s perspective.

Imagine me talking with your family.  Close your eyes and picture yourself not being able to speak, lying in a bed seriously ill or on life-support measures with your family and friends gathered around your bed.  Imagine them answering these questions from your perspective:
·      Who or what is most important to you?
·      What in your life is most meaningful? 
·      What effect would a serious illness have on your day to day life; your family’s lives?
·      What religious or spiritual beliefs do you have and do they impact your view on death and dying?  Or does your family have beliefs that you don’t particularly share? 

If you haven’t told your family these answers, how do they know?  If you haven’t talked with your family about these answers, you place them in a situation where they have to guess. Would your family/friends know your wishes?

I see families distraught with an incredible amount of responsibility and weight on their shoulders when making medical decisions because they have never talked about this.  They’ll tell me what they want for the patient from their own point of view and how they hope for this or hope for that.  I have to ask, “Is that what they want or what you want for them?”  That’s the tough part.  Recently a family consented to a tracheostomy tube and a feeding tube for their comatose daughter because it was too hard for them to let her go.  And they said they know she would NOT have wanted it…but they wanted it for her and the alternative was too much for them to bear.

If your spouse or parent or adult child was dying and you had to make decisions, would you be able to say what they wanted regardless of how your heart was feeling?  Could you really SPEAK FOR THEM in the moment?  If not, I can help you have these conversations now with your family.  For all of us, it is worth the time it takes to tell your family what you want and then put it in writing…what you really, really want.

“Your silence gives consent.” – Plato

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