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jacki long

Thank you Carol!


I am facing a complicated situation that you might be able to relate to. My younger sister has been extremely ill. No cancer, but heart conditions I have only read about in my medical coding classes, one of the worst cases of a heparin “allergy” (HIT) seen locally, and just about everything else. I have had a horrible time getting her to fill out her paperwork....and we come from a family that has had paperwork. How do you talk to a person who has faced death multiple times but seems to not care about her final wishes?


Claire: if someone knows your sisters wishes and will be able to speak them for her when she can’t speak for herself, the paperwork won’t matter so much. Even if she has not designated a DPOA for medical decision making, as long as there is
not conflict about what her wishes would be, just someone knowing her wishes will be enough. Some people just can’t talk about these things. My suggestion would be that the family talk among themselves and see if your sister has ever made her wishes known
to someone. If no one knows her wishes then my suggestion would be that one of you (just one so she doesn’t feel overwhelmed) talk with her. I would start the conversation from a place of love and concern, letting her know you are just worried and want to
be sure that if things are not going the way you all hope, what she would want her care to look like. Does she want all medical interventions exhausted or would she rather focus on being comfortable and being out of the hospital if her time is short? I also
am wondering if she (and you all) have clear information about exactly what her current medical condition is. These talks are hard. I wonder if she has access to a palliative care team at her hospital? Does she let family go to her cardiology appointments
with her? If it’s ok with her maybe someone could. Ahead of time, I would ask your sister if she is ok with you asking hard questions about how she is doing overall. Sometimes people don’t want to know, and sometimes they do but they can’t ask for some reason.
If she doesn’t want to know, ask her if it’s ok if you ask about it when she leaves the room so you can know. The bottom line is you will have to be respectful of what she wants. Even if it’s not how you would handle things. And that is so hard. I am
sorry you are going through this. Thank you for asking for my suggestions. I am posting this publicly in case anyone else is facing this situation and would find it helpful.

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