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Completely Confused

Posts: 22
Joined: Feb 2011

Hello, I am fairly new to the boards,but not to caregiving. I have cared for several family and friend of family members for many years. That eventually led into a Personal CareGiving as a chosen profession after caring for an owner of a local Home Health/Hospice agency .It is somewhat of a calling...but it changes when the patient is family!

I have been following the Liver Cancer Board for a few months now... My oldest brother has advanced HCC (primary liver stage 4 with spinal mets). We are really having a time of getting all of the doctors involved to be on the same page. He has been hospitalized 3 times in the past two weeks, due to various complications. He was first a hospice patient who chose to persue chemo in January, so hospice bowwed out. He developed a blood clot in his lung and was treated with blood thinners and sent home. He immediately began to bleed internally from varices and returned to the hosp.. The varices were banded and he was informed that he would no longer be a good candidate for the chemo and advised to return to hospice. He was very reluctant to do so and needed more time. He came home swollen already with ascites and edema which got increaingly worse over the past week.

Again we returned to the hospital where he was treated with diuretics and had an abdominal tap to relieve the ascites. It helped but he is still very swollen.

HERE IS WERE THE CONFUSION BEGINS... His wife was with him last night so I came home to rest. The phone rang early this morning and he was on the other end speaking as if he were breaking the news to me for the first time ( we had known that this was terminal ), that the end was nearing and that his body would continue to retain more fluid and so on. He told me that he had decided that bringing hospice in now was best for everyone, that they could treat from the comfort of home and that we would avoid all these hospital trips. He was at a place of acceptanceand at peace with HIS decision...he got there in his own time. I was somewhat relieved and saddened all at the same time.

ALONG COME DOC HEPATOLOGIST WITH on call DOC ONCOLOGIST, in to get him ready to go home. doc H thinking they were doing a hospice referral., when all of a sudden Doc O. takes a left turn and wants to know why he is not taking his chemo pills and that if it were him he would still be taking them. So in a matter of minutes brother is completely confused as is Doc H.

He was released...no referral...still badly swollen, with an appointment to see his personal Oncologist in the morning. Now he has more questions than answers.Completely confused,he is unable to sleep tonight in anticipation of all the things he wants doc to answer.

I suppose I just needed to get this out there...
Sorry so long, it is just so complicated.

Thinking of you all as you face similar situations.

Barbara53's picture
Posts: 658
Joined: Aug 2009

Your story burns me up! My plan for Dr. O is for him/her to go home with your brother so they can be there moment to moment to ease his suffering.

Sad to say, but in a profit-run health care system, everyone's motive is suspect.

But the abominable thing here is that your brother seems to have finally engaged in the natural dying process, only to be told he needs to suffer some more. So now he is supposed to insist on dying? That is so crazy. Whoever holds health care proxy needs to have a private conversation with Dr. O that ends with "you're fired."

My heart goes out to you and your sister in law. Hang in there.

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