So, despite being told on 21st September my husband had only weeks to live here we still are on this awful journey with no end in sight. Another reason why I don't think Doctors should play God. Angry.........!
Do you think hospice care (that is hospice care in your home with details as agreed between you and them) would be a help to you. Your GP's surgery should be able to put you in touch with the relevant people. It might be a big help to you and you can vary or cancel it as you wish.
Hello Netty, There was a case last year where the patient had been in remission from Lukaemia but it came.back. She was 18 years old. She was alone when they told her and she died so very very frightened ten days later. Her parents were furious and have actually started a petition to get these rules changed. When I can recall her name I will send it to you so you can read for yourself. I think firstly they should ask patients if they want to know if the prognosis is terminal and only then ask them if they want an idea of time left. Everyone belongs to someone.and its the nearest and dearest who know us the best.
Hello, Good suggestion with which I have no problem except they HAVE to discuss it with my husband the patient !! How I wish they would go through me. The GP explained that she cannot guarantee a nurse would not mention it to my husband ( that his death is imminent). Apparently they come to talk to the patient to discuss their condition, pain, religion, emotional and anything the patient wants. My Husband wants that no one talks to him about it. He woukd only need pain relief and I would need a hand washing and toileting him. I would dare not leave him alone with them incase they took it upon themselves to tell him. So in short I am now blaming them for my stress.
I have only had one hands-on experience with hospice nurses which was last year. The patient wasn't my immediate family but I was at his home quite a bit and talked with his family and the nurses. In practice they were absolutely tactful and didn't discuss things that the family didn't want discussing. I realise this might have been a one-off but it would not surprise me to know that they can use a bit of discretion when necessary. It might be worth a try; these nurses just wanted to help the family in the way that seemed best. It may be that some areas are more dogmatic than others! But I understand your fears.
Thank you again. I have been told that they have to explain to the patient why they have come, what they will do and why they are doing it etc etc. This is their Legal and Moral oblugation to the patient .i am certain someone in pain will just be glad of the relief nevermind about the formalities!
I've spent quite some time reading through the guidance on informed consent and respecting a patient's wishes - which are in conflict in your husband's case. I wish I could say I can see an easy way through it, but it has just made me realise just how complex your situation is and how frustrating it must be for you.
Thinking back to my Mum's final days, the only thing the nurses really said to her were along the lines of "I'm going to give you an injection to help reduce the pain you're having because of the cancer, is that OK?" There should really be no practical need for them to say anything additional to this".
The nearest I could find is an ethics paper which summarises the legal and ethical situation and asks the question "The right to consent: Is it absolute?" at www.bjmp.org/.../right-consent-it-absolute
This paper includes a statement "Making an irrational choice does by no means constitute lack of capacity and a competent patient’s irrational decision has to be accepted even if this leads to an adverse outcome (including death)". From a clinician's point of view your husband's decision not to be given all the available information might be considered "irrational" but this has to be accepted by them.
There's a dilemma for them about getting consent for treatment from relatives as "no one can consent for a competent adult" and for treating someone without informed consent as "A medical intervention without valid informed consent is a criminal offence and the physician can be charged with battery.".
