Kristina1
Senior member
- Joined
- Jan 26, 2017
- Messages
- 822
- Reason
- PALS
- Diagnosis
- 03/2017
- Country
- US
- State
- MA
- City
- Grafton
This is mainly a vent..
We are still working on discussions for writing up an advanced directive. My doctor is referring us to a palliative care doctor to help facilitate those discussions and make final decisions.
While talking about this I told my husband when the time comes I DO want a trach, but if afterwards I am miserable and have no quality of life I would reserve the right to take it out and let nature take its course. He already knew (and agreed) with wanting trach, but I guess he did not realize I would consider removing it if my quality of life became too poor. He got upset and said if I got a trach he would want me to keep it no matter what, that removing it was basically committing suicide. For religious reasons this was unacceptable to him. I totally disagree, to me it's obvious that it's not suicide. It's choosing to end an intervention and accept the consequences, which are that my body would naturally die.
I am totally shocked that he had such a different view. I thought we were on the same page. And it scared me because I was planning to name him as my health proxy/representative.
Now I'm just feeling very emotional about the whole thing and our disagreement.
We are still working on discussions for writing up an advanced directive. My doctor is referring us to a palliative care doctor to help facilitate those discussions and make final decisions.
While talking about this I told my husband when the time comes I DO want a trach, but if afterwards I am miserable and have no quality of life I would reserve the right to take it out and let nature take its course. He already knew (and agreed) with wanting trach, but I guess he did not realize I would consider removing it if my quality of life became too poor. He got upset and said if I got a trach he would want me to keep it no matter what, that removing it was basically committing suicide. For religious reasons this was unacceptable to him. I totally disagree, to me it's obvious that it's not suicide. It's choosing to end an intervention and accept the consequences, which are that my body would naturally die.
I am totally shocked that he had such a different view. I thought we were on the same page. And it scared me because I was planning to name him as my health proxy/representative.
Now I'm just feeling very emotional about the whole thing and our disagreement.