Yesterday I met with one of my mother's doctors to get some answers to the many questions zooming around my head after she died. I did discover some mistakes and mis-management in her case. These mistakes did not lead to her death but did lead to prolonged suffering, which is upsetting. But the most upsetting thing for me to hear was that doctors knew she was terminal in October last year (2010). But I did not learn of that information until 10th February 2011, 6 days before she died. Apparently the surgeon who performed my mother's cystectomy (bladder cancer) saw during her operation in October that the cancer had spread and knew then that she was terminal. A few days after her surgery he had a long talk with my mother about the fact that she was terminal. But it seems that my mother did not understand this fact. It is possible that she hid it from us, but when she was admitted to hospital in January 2011 with complications the treating doctor said she seemed to have no concept of the fact that she was actually terminal. So I don't think she hid it from us, I think she really did not know she was terminal. Which may have been because she didn't understand or maybe she didn't even hear (she was on a lot of strong medications at the time the surgeon told her) or maybe she was in denial. I will never know the answer to that.
But what gets to me more is that the surgeon then outright lied to us and told us (the next of kin) that my mother's cancer was contained with the bladder and had not spread. He maintained this fact and kept telling us everything looked good for a full recovery.
So of course it was a massive shock when we were told that my mother was terminal and then 6 days later she passed away. If I'd known my mother was terminal earlier I would have spent a lot more time with her before she died, so I feel like time was taken away from me and my mother and other family members.
I understand that my mother may have said that she didn't want the information that she was terminal disclosed to her family (which is something I can never know now). But even in that case can a surgeon then LIE to the family and tell them that the cancer was contained and had not spread? It seems so wrong that he lied about her prognosis. If my mother had told him not to tell anyone, shouldn't he instead have said that he could not discuss my mother's case rather than lie to us?
I have only just discovered this site and have been reading all your previous posts. You have shown such strength and compassion through your mother's illness that I am truly saddened that you did not get to spend the time with her you would have liked, before she passed away. I can also understand that you feel angry about this.
As for the doctors' comments, I don't understand why they would do this - especially as my dad's doctors have been very open with me - in fact, they have asked on several occasions if I need to talk with them privately to discuss things that would be upsetting for mum & dad to hear.
In my dad's case, he was told in January last year that the cancer was incurable, but I don't think it 'sank in' until a few weeks ago. My mum still can't understand why he can't have chemo any more (he suffered kidney failure from the chemo drugs) and is still trying to make appointments for him with the chemo doctor! My dad is angry and intends to sue the doctor for trying to kill him!
I guess most of us only hear what we want to, but in your mum's defence, it sounds like the doctors mad a mistake with their prognosis - I can think of no other explanation for them saying what they did, as most health professionals will tell you the 'worst case scenario' rather than build false hope.
If you need closure, it may be useful to contact your mum's doctors to find out their side of the story. I wish you well as you grieve for your wonderful mother.
hi..just letting you know, that you're not alone..mistakes and mismanagements happened not only to patients BUT to doctors who became patients themselves and to their family..i'm a GP and my wife has breasst cancer with spread to brain and lungs..i underwent UNnecessary knee operation due to "misdiagnosis" of the specialist radiologist who read my knee MRI..my knee MRI was wrongly read by that specialist radiologist to have "shattered knee and torn ligaments" and my orthopaedic specialist did an urgent operation just to find an healthy normal looking knee!!..this happened while my wife is recuperating after her almost 9 hours of breast reconstruction..not only that, after my wife's brain operation, her own specialist radiologist and oncologist "missed another growing tumour" on her lungs..previous scan of her lungs apparently was clear but when i requested for a repeat scan with a different radiologist, it's already there! they missed it and it's growing!it's hard to believe that this is happening to a first world country like australia..not only that, we arrived here in WA and started my work as a GP on 2005 and these things happened between 2009-2010..and the reward of the australian immigration to my medical services and taxes i contributed while working (until now), providing medical services to rural and remote areas of WA, and the medical negligence to me and my wife, is a BIG NO! Our Permanent Residency application here in australia was refused and denied by the immigration..
again, you're not alone..you can read the whole story on my blog..thanks 😉
Thanks Jackie. I have talked to one of mum's doctors who was good and had been through mum's history. She was the last doctor to treat my mother. And she had phoned my mother's surgeon to get more details and he told her that he'd talked with my mother soon after her surgery in October and explained that she was terminal. So they did know in October that my mother was terminal. But with us the surgeon told us everything went well and the cancer was contained. There was no mention that the cancer had spread or that my mother was terminal. So I am wondering if this is something I should pursue and complain about. It's the fact that he obviously lied to us that I am upset about, but I don't know if complaining about it will make any difference to him or not. It sounds like your father has great doctors though!
Thanks junstel88. I read your reply and your blog post. There were a lot of mistakes made in my mother's case too. But I am now more upset about the fact that a surgeon lied to us than the mistakes that were made. Though I am thinking of making a complaint to the hospital that sent my mother home as a terminal patient without us knowing about it and without any contact or care given at all. That is so wrong and every doctor I've talked to about that has said that that shouldn't have happened. So that is the other thing I am upset about.
I know pursuing these things won't bring my mother back, but maybe I can prevent another family from having to go through this too.
Does anyone know how I go about accessing my mother's medical records from all the doctors, surgeons and hospital stays?
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.