1. jools

    jools Registered User

    Jun 29, 2004
    39
    How many of you are aware of this bill which has just been put before Parliament? There are two aspects in it that I think we should be pretty worried about. One is that food and water provided by drip be re classified as 'medical treatment' as opposed to basic care and could be withdrawn as such, thus hastening death. The other is the 'advance directive or decision'. This is an advance statement made by the patient, while sound of mind, what treatments they do or do not wish. There's nothing wrong with that, but unfortunately, this statement does not need to be written down, witnessed or registered, and can be reported orally by a relative to a doctor. It will also be legally binding. I think in legal terms that this is shot full of holes. If a relative wanted to inherit, all they would need to do is say that the patient told them that they didn't want treatment by drip and that would be that. No checks, no nothing. Given that we have had a case where a nurse was convicted of killing two patients who were bed blocking, and another case of eleven people on a ward in England being starved to death, I think we should be very worried about this. A lot of people with Alzheimers are ending up in hospitals because so many nursing homes are closing, and they are going to be particularly vulnerable, I think.
     
  2. Andrew

    Andrew Registered User

    Jul 9, 2003
    12
    London
    Dear Jools

    I think there is a lot of misinformation flying around about the mental capacity bill. There is nothing in it that will lead to euthanasia - the intentional killing of another person, usually by a healthcare professional. I, like you, am against euthanasia, but support the mental capacity bill. I think there is much in it that will make life better for people.

    In fact the bill will make euthanasia more difficult because it has a whole range of safeguards in it which will have to be fulfilled for an advance directive to be valid.

    The end of life is a very difficult and traumatic time. There are no easy answers. But I have spoken to people who have nursed people with dementia in the final stages of the disease who say that they want to be able to make choices about the type of care they themselves will have. Being fed through a tube in your stomach when you are only hours from death is not very dignified and people should not have to accept this type of artificial treatment if they do not want to.

    If you or I make a choice about our treatment when we are in hospital we have the choice about what to accept. I can refuse a heart bypass, removal of cancerous cells or a blood transfusion if I want to. It is only fair that I am allowed to also write down my wishes about circumstances where I am not able to make a decision for myself.

    In terms of safeguards the code of practice which goes with the mental capacity bill does recommend that an advance directive is written down, witnessed and regularly updated. Also, doctors and nurses will continue to have big responsibilities to ensure the safety and well-being of their patients. The government has introduced a whole range of safeguards to make sure that advance directives have to be carefully constructed.

    I agree wholeheartedly with your comments about the lack of quality long term care for people with dementia. It is scandalous that people have to travel many miles from home to find suitable places.

    Best wishes
    Andrew
     
  3. jools

    jools Registered User

    Jun 29, 2004
    39
    Hi andrew,


    I agree with you that people should be able to refuse intrusive treatment if they wish. But this isn't about intensive care machines; we're talking about simple drips here, and as I say, how are they going to check whether that is what the person wants, if their directive does not have to be written down? If the person has made an advance decision, why couldn't it be written down at the time they made it?
    The reason I am so worried about this is because I have been told by people who are friends of mine about bad practice. My friend's aunt went into hospital a couple of years ago; i think it was stroke, and she'd come round. However, her condition was rapidly deteriorating and it was only when a medical friend went to visit her that they found out what was wrong; they weren't feeding her and she was dying of dehydration. He ordered them to put her on a drip and she recovered quite the thing and came out of hospital.
    Another friend of mine was working in a nursing home and she came in one morning and was ordered not to go into the room of one of the people she looked after. She went in just the same, and found her on the floor; she'd fallen and it looked like she'd broken something. She was going to call an ambulance but the manager wouldn't let her, and being inexperienced, she went along with it. The woman died a few days later.
    a Jehovahs witness rang my doorbell a few days ago. My mum made an appearance and we started to chat about medical matters. She told me that an aunt of her's had gone into hospital with stroke, had come round and been in a couple of days,but she was refused food and water and they only found out when the aunt told them, by which time it was too late. She died the same day. When she spoke to a nurse friend of hers about it, she said 'Oh we do that all the time.'
    If you look at where the money is going just now; we can't get proper funding for Aricept, three nursing homes per week are shutting in Britain and pressure is being put on hospitals about bed blocking, I think its quite obvious where this legislation's heading. Do you think that the law would trust an oral report from an interested party like a relative, of an advance directive regarding inheritance of property? like heck they would! So why are they being so naive and trusting, esp when death usually involves inheritance?
    I'm not the only one worried about the bill; Values into Action, Changing Perspectives and People First which are learning disability groups are worried about it as well.
    Where are all the people from shut nursing homes going to go?Hospitals? Back home? When are we going to have a campaign to pressure the government to end the deadlock over nursing home funding; either ring fence the money going to councils, or fund them centrally but don't let them all shut?
    Sorry to sound off Andrew. but the trouble is that we assume that everyone is as well disposed to the mentally ill as we are, and they're just not. We cost a lot of money and the state would love to be rid of us, and it shows in the systematic neglect at every level of funding in care. I think this bill is a classic trade off; more social rights in return for fewer people to treat and we should be opposing it. Nursing homes in Holland have dropped by 80% since they brought in euthanasia, and what governmnet wouldn't want to save that kind of money. I know the bill says this is not euthanasia, but it has left the kind of loopholes that is going to effectively bring it in by the back door.
    Yours cynically and sadly,

    Jools
     
  4. betty2

    betty2 Registered User

    Jun 14, 2004
    19
    living wills

    I agree that this is a very worrying area, not everyone has someone who has their best interests at heart. I had this very discussion with the solicitor last week and as a result we have arranged a living will. This doesn't answer the question and it may be too late for some people but i thought it may be of interets.

    Someone a while ago talked about the scottish EPA whcih covers wisjes around medical care as well. I asked if this existed here, it doesnt, but what does exist is a living will whcih is a document likely to be accepted under the new Government bill. It lays out peoples wishes in certain medcial circumstances, so for example under the will a person cannot ask for medical staff to purposefully end their life, but they can ask for treatment to be discontinued in certain circumstances and vice versa. I know this will not stop unscrupoulous people, but, a copy is given to your gp/consultant and close family and anyone else at your request, which makes sure that several epople are aware of you wishes, and will hold weight at the point of descisions. The living will was developed by the terence higgins foundation and now several agencies have adopted it.

    The solicitor is currently preparing my dads, who is absolutley adamant and has been for some time, with questioning from a variety of people to make sure, that he does not want to continue with life saving treatment ahould he not have full control of his faculties.( they word this in a particular way in the document).

    an example can be found on the terence higgins website. I dont know if theres is any infomration on the Society site.

    We are using a slighty different version. i will try and post it if i can.

    betty
     

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