Not wanting to know prognosis

When my husband found out he had Stage 4 Bone cancer he did not want to know the rest..... He refused to see the Oncologist, but I did. He thinks he has about a year left but the truth is that his cancer turned out to be so extensive they have given him less than three months. My struggle at the moment is trying to understand that if a patient states they do not want to know, why do the authorities say otherwise ? and say that they have a legal obligation to inform him? I think this is so, so wrong. Medical staff should be there on a practical level, not an emotional or personal level. I want to keep him at home when his time comes for the very reason that I do not want him to find out and all I would need would be an extra pair of hands to maybe assist. I can give him the medication myself. All he has to know is that they are calling in to keep an eye on his pain, nothing else! I do not want his last few days or hours spent in fear of dying, I think that is cruel and there really is no need at all to tell someone, especially if they have stated they don't wish to know. True, he may well guess whats going on but thats not the same as someone (a stranger telling you). If anyone is going to tell hiom it would be me. Also I do not want any 'outsiders' here when he goes, they are not goiung to steal my last minutes with him. When my Mum died the Doctor came at 8pm and said it would be the same night. He left and she died at 11pm. We kept her until 9am the next morning when we rang the undertakers. I am angry, very angry. The GP said they could send someone out to talk to him and when I asked are they likely to mention his immiment demise she said they may do.

  • Hi Petra ... my thoughts are with both of you at this time ... I think we should have control over how and what we want to do or know ... cancer takes away so much at least it could leave us the dignity of how we want to go from here ... my dr has given me full control over my treatment .. he advises me and gives me the pros and cons ... then gives me time to digest both , and let him know what I want to do ... I respect him and I think he’s shown me the same ... I will be forever great full to him ... I just wish you could have someone like him ...

    you sound a very strong lady ... so I would say stick to what the two of you want ... sending you both a big hug ... Chrisie xx

  • Hi Petra,

    I am sorry to read about your husband's condition and prognosis.

    His wish not to know his detailed prognosis is rare but it isn't all that unusual. It is probably giving his doctors an eithical and legal and ethical dilemma. On the one hand they are legally obliged to treat him with his informed consent, so he can weigh up for himself the risks and benefits of different treatments including what drugs he should take for pain relief when he reaches the end of his life. On the other hand they are ethically bound to respect his expressed wishes, including his wish not to have his full prognosis revealed to him. They are more likely to be put on trial or sued for witholding information from him than they are for not repecting his wishes to be left uninformed. Sadly, more and more families are suing doctors for this sort of thing and as a result they tend to do things less likely to get them into legal bother.

    My own feelings are the complete opposite to your husband's, but I respect and can understand why he feels that way.  I hope his doctors fully respect his decision.

    Best wishes
    Dave

     

  • Thank you for your kind reply. I wish you all the best your battle, it seems as if you have the loveliest medical support xxxxx

  • Thank you for your kind reply. What I cannot get my head round is that if they know that he already knows he is dying, why do they have to tell him how soon. I just find it distasteful to say the least. If he became bed ridden and was in pain and they came to give him pain relief and he actually asked what they were giving him and why (although I doubt anyone in serious pain would ask why) then I could perthaps agrfee with him being told. To me, telling someone they have weeks to live is like rubbing salt in the wound.

  • I can well understand your feelings, especially when they get these things wrong more often than not.

     

  • Thank you davek. I am just going to see how things go, it may all be taken out of my hands in the end.

    He is off fishing for two days tomorrow, and again next week. He said he is going to make th most of whatever time he can so I agree ! He will be with others who are aware of his conidtion so I am not unduly concerned. In fact if he had a cardiac arrest at the riverbank and passed away I would be delighted.....for him !