My mother had 4th stage breast cancer. It had spread to her brain and after radiation she was failing. They assured us her cancer was not active but that she was just giving up. Then the oncologist recommended hospice so I could get more help in the home and the meds would all be “free”.
The first day the hospice nurse visited she asked my mother if she was in pain, my mother said yes. The nurse asked no further questions but began telling me what meds to give. The next day my mother was so out of it she barely recognized I was present. Two days later she appeared to have pneumonia and I revoked hospice and had her taken to the hospital. My brother was on his way home to the States from military deployment and I knew my mother’s greatest wish was to see him.
When admitted to the ER she was so out of it she had no idea where she was or what was happening. I explained that my brother was in the air flying home and would be here the following AM and that I wanted him to have a warm hand to hold and to be able to say anything he needed to say to her whether she understood or not. This meant everything to her and my brother!
The ER dr said he understood, that this happened “all the time” and that he would do his best. However I was called on the phone by the oncologist on duty and berated by her for seeking medical treatment for my mother. Her parting shot was “take the poor woman home and let her go”. Funny thing is that while I spent time arguing with the oncologist about the admission, the drugs hospice had my mother on WORE OFF! Five hours after admission to the ER she was sitting up in bed talking to me and understood that my brother was on his way. The Er dr was amazed at the transformation but my eyes were opened to the fact that she was being over-medicated.
The next morning when my brother and I walked into her room she was sitting up eating breakfast. At the sight of my brother she clasped her hands and said “thank you God!”. Her pain it turned out was not caused by the cancer but because she had no meat on her bones and her butt hurt where the bones were pressing into the skin. The hospice nurse never asked any questions about source of nor did she evaluate level of the pain.
She did however show up at the hospital and started in about pain meds and the need to use them for pain. My brother and I were furious. We would never have denied the medications she needed, but she did not need what that nurse was pushing! I fired that hospice and chose another. By this time I knew the questions to ask and had the strength and courage to tell them what we expected. My mother was awake, alert, pain free and able to spend Christmas with her family around her, eating her favorite pumpkin pie. She passed away in early Jan having an extra two months because I fought for her.
I warn everyone to be careful with hospice. Get involved and ask questions particularly when the discussion turns to medications. Make sure a proper evaluation of pain level is done. Be the advocate for your patient, question everything. The death panels are already here.
This is not the first bad experience my family have had with hospice. My mother feared hosoice becasue of what they had done to my stepfather. I’ve told that story here before.
You are right on the fact that people should not be afraid to ask questions and demand answers. You also have the right to refuse a treatment if you want to...
When my father was in the hospital with leukemia they wanted to give him a blood transfusion, and I was with him when the intern came in and told him.....
He told my he didn't want the transfusion, I went to the desk and inform the intern no transfusion, my father wanted to refuse....this is where you have to stand your ground....
The intern said the transfusion was ordered by his doctor, I said too bad, it was being refused...the intern called the doctor and I talked with him on the phone and explained my fathers desires on the subject....the transfusion was canceled.....His prognosis was life span of 10 days to 6 weeks (acute leukemia, when he went into the hospital for colon cancer operation, his blood work was hinky and it took quite a few days to get an accurate diagnosis of acute leukemia) at 85 the idea of chemo for the leukemia before he could have surgery for the colon cancer was not something he wanted...the chemo itself would have killed him probably)
He came to my house by ambulance and lived 10 days from the day of diagnosis until he died....No patient gives up their rights to refuse treatment even if the treatment is for their own good according to the doctor...
All things are measured by patients if they are not afraid to question the why, how and when of any treatment...
Again, your experience certainly added grief to your situation..I am glad your mother and her son got to see each other, you did the right thing in taking the situation into your own hands....good for you..
This is a lesson to other freepers that may have to face the same situation....ask questions and the patient has the right to refuse or even leave the hospital....
My father at another time left a hospital because he didn't want what the doctor wanted....sometimes you have to sign an discharge AMA. It stands for Against Medical Advise and actually protects the hospital from having a patient say he was told to leave...
You had the courage many don't in dealing with medical problems.....you did good girl...:O)