Annie,

I have no way to know if his physicians are making a medical mistake-eg missing a diagnosis (which is always possible and I too have seen patients this age who improved tremendously with change of meds. including vitamin B12-even though they supposedly had normal values, and even saw lymphoma presenting in this way in an elderly patient).

I have no doubt that they are make a humanistic mistake. their role as physicians is to help those who suffer and provide the best possible care. their role is to support them and their families through it and their role is to fulfill their wishes, regarding their medical situation in the best possible way.

end of life decisions are very important and should be discussed. they are also dynamic. what would have seemed to me as impossible existence may now be seen as a life worth living. there is no way in the world you can know how you would truly feel under a certain situation. I can tell you now that if it ever comes to it, I do not want to be intubated and change my mind completely if this happens and a truly caring and compassionate physician makes me feel differently, and I realize that if I refuse intubation I have given up on any chance for ever recovering or living at all, and maybe living with a tracheostomy is better then not living at all.

physicians like to put patients in convenient boxes. and those just don't exist.

I just went over my rehab's physician letter from more then 2 years ago.
he wrote there that I have severe generalized refractory myasthenia, that what rehab can do is limited, that I should be given emotional support by a psychiatrist and psychologist as such severe disabeling symptoms obviously affect my emotional, family and social situation. and that I need a companion to be with me all the time, so that my family can be free to live their normal life. (at that time my son was temporarily taking care of me).

I called him the next day, and asked him to cross out all the psyche. BS and write instead-every effort should be done to help her return to work.
He said- OK, if if makes you feel better I will do that.

When I came to see him a year or so later, he was amazed to see that from all his recommendation I took the one that I should have a companion ( I realized that I can't function much professionally or even at home without that), but that other then that I was working, and even went back to my role as the head of a small unit. (my dept and hospital were ready to wait for me to come back and someone took my place only temporarily for the 10 months of my leave of absence).

a few days ago, I set next to a very ill patient, and told him this story-Of how utilizing all my clinical skills and emotional abilities I managed to find the way from being nearly bed-ridden and respirator dependent a good part of the time to the way I am now. I could see the smile come back to his face when I told him that, because he understood that just like I was not ready to give up on me, I am not going to give up on him.

He then told me a story- He said that once there was a tailor who was ready to mend every suit or clothes no matter how torn they were. he would work day and night so that he could get everything fixed. one day a friend asked him-why are you working like that. the tailor answered- what ever was torn can always be fixed, as long as there is enough light left in the candle.

we are not gods and we do not have the right to decide who's life is worth living and who's life is not. what to us as healthy people seems as impossible existence, may be very different for someone else and vice versa-if someone's life is not worth living in his/her eyes due to a severe illness, it is not for us to decide if it is.