Have been banging my head against a brick wall with this! Doctors still think my man is capable of making his own decisions. They were not available at the weekend when he was not eating, drinking, coughing on food and having his big sleep! The very helpful nurse understood where I was coming from and thought like me.
The lovely doctor (from Essex would you believe!) who did the rounds today explained afew things to me. Thst since our ffinances are all joint owned there is no problem there; and that he also considered it was not necessary at this point. He went on to tell me that in circumstances where a life support needs to be turned off, the decision is made by the medical staff, not the patient's partner, and that the EPOA may be required at that stage to tip the family decision to agree.
In other words, it came to a decision to give or not to give treatment, such as antibiotics to my man, it would be their decision and recommendation to me, and not my overall decision.
I realised today when I felt it necessary to give thought to this process, that it would have been easier for me to mske it on a bad day, such as Sunday, rather thsn on a good day, such as today! And I realised that it would not be an easy decision for either of us to make! Being told that the doctors made such a decision and not me, made it easier to deal with today. And in such circumstances an EPOA was not required to be in place. He explained it far more compassionately than the doc in charge did, and I am grateful for that.
So now I see they will treat the pneumonia for as long as they think the treatment will be successful, or as long as they can put a line in his veins. I see that as being more problematic than his ability to recover with antibiotics!
And it is a decision that is not mine to have to make! So i can rest more easily and let that worry go!
Appreciate your thoughts!
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honjen43
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I have always said it was not necessary for me to complete an EPOA as everything is in joint names. I've had a few problems with utilities being in my husband's name but have managed after a lot of hassle to sort them out. A few weeks ago, however, I found out that one of his pensions has been invested somewhere but only for 5 years as it pays out a higher monthly amount as C has a life limiting condition. Next year it will have to be moved or sit where it is with no interest and no monthly payment. C will be the only one able to move it and by next year, if he is still here, I doubt he will be able to show he understands as he does at the moment. I posted the EPOA forms off yesterday. It cost me £110 to do it myself. The solicitor was going to charge £500. I have only covered finances as all his wishes for end of life are written down.
It wasn't difficult completing the forms on line. Getting hard copies signed in the correct order took a bit of time but it wasn't £500 of work.....that's if it doesn't get sent back because of mistakes.
Our G.P. advised us to lodge a copy with here and she put a note in the file, after discussing it with Liz, saying she had discussed it and it was indeed Liz's wishes. Though this is a not a legal requirement and it is legally valid without, she said that Doctor's making major decisions on the basis of them were more likely to comply if this was done.
Colin's copy is lodged with the Hospice. I have the original. When he had the PEG fitted the HENS responsible also wrote down his wishes about feeding if he gets really ill. They have that copy but she said the GP will be notified.
We completed the end of life plan at the hospice and they never said we should get a LPA. Sorry I don't know if it's necessary but I'm not going to get one completed ( although I do have the habit of ending up doing things I say I won't). My thoughts are why bother getting us to record the information at the hospice if it's not going to count. I'm sure someone here will be able to give us the answer.
Sorry continuing to intrude, forgive me. My excuse is that I have been a professional involved in this as a person qualified to assess Capacity under the act and as a health professional.
LPA only becomes active when the patient (being formal) lacks capacity under the act.
There is a simple test for capacity. It must be given for mthat specific question and it is not general. That is no-one is deemed to lack capacity for all decisions globally.
Most often clinical staff are sensitive and reasonable and very good at end of life planning.
However, the medics are obliged to keep the person alive and under treatment until it becomes hopeless.
For example if the patient gets pneumonia they will start treatment to prolong life.
Some patients don't want that. They would rather slip away with pneumonia (which is actually a kind dying also known as the old persons merciful release by many medics). This is where an LPA becomes important. If your loved one does not want 'all possible treatment' or quite a number of other treatments, such as a PEG earlier on. Then this document enables the Attorney to step in and give the clear direction to the medics which their loved one is unable to give at that time.
I could go on... My mother. She was very elderly and happy in her heart which was breaking being away from her cottage, her garden and the people she loved. She had been in care for two years and was lonely and sad.
She fell ill and was taken to hospital. She said to me, in hospital, that she had, had a good life and had fulfilled it as best she could. She said she was ready to move on. She was at peace with herself and being a Christian, she looked forward to seeing my father, her husband once more. She missed him so much.
She developed pneumonia. Without treatment she would have slipped away quickly. The consultant indicated that it was unlikely he could save her, but he was obliged to try. I had no LPA. With it I could ask that he did what he clearly thought was the right thing... to let her go.
She suffered for two more weeks until the doctor was able to apply the Liverpool Protocol and allow her to pass.
I am sorry if this is graphic... I want to be ready this time to protect my dear love when her time comes.
Thanks Kevin_1 . I appreciate your professional thoughts. Am in process of getting my thoughts together to see my lawyer and find out where I go from here. We are on round 2 of the pneumonia cycle. Next time might be moot point, as if they can't get line in easily to administer, or he is too weak to take treatment. None of us want to be in this position!
I am having similar problems to you. My husband F has CBD and in nursing home waiting to come home.
As far as the EPOA is concerned I would always advise getting knowledgeable info from an expert. It is something you should and when you do get more certified copies. I believe that the doc you spoke to wrong it is not their decision to end life. You also need a lasting power of attorney - health and welfare. It's becommingmore and more important and if you man goes into a home they will ask for it. It has to be registered and this costs just over £100.
I do hope things get better for you. I have CHC for F but as He should now be commuting home we have to do the process all over again. My biggest fear and it is a possibility that the funding committee will only pay for nursing home care and not a home-based care package.
Good luck and I am certainly sending you strength and wishes for recovery.
Gosh, they are being a little difficult. It must feel a little undermining. Stay with it.
Sorry this next part is all a bit rambly... Its such a massive topic. The one thing I could not find is what is the law were a relative to disagree with the Doctor. It is not unusual for there to be holes in these sorts of provisions and this Act has more than many. I believe they are trying to fix them. Were there to be an unresolvable disagreement then I think it would be a case of going to the Court of Protection... Very expensive. So here I have focussed on a collaborative solution with a few 'encouragements' if faced with a belligerent medic.
Quite a bit of what I am going to write will be very obvious to you... Its sort of just there for anyone wanting to catch up.
Under the Mental Capacity Act people are presumed to have Capacity until they are shown not to have it in that single decision instance. E.G. Every time there is a decision to be made consideration should be given afresh to persons capacity to make that decision themselves. For example I can understand the implications of going out in the rain and have capacity to make that decision. But I might not have capacity to make complex decisions about my clinical care.
Note the existence of IMCAs. Independent Mental Capacity Act Advocates. (Telephone your local social services and ask to speak to one if you need to.) If they assess then their decision trumps all others and is final. They do not normally assess capacity when there is a capable relative on the scene. However they can usually be telephoned for advice cases where the individual is at risk of their best interests being ignored in serious situations such as major medical treatment. In this case where the Dr says there is capacity and the relative says there is not and there are major medical decisions to be made.
If Capacity was to be found lacking for that decision then a Best Interest Decision needs to be made. This should be the decision the person would have wanted to have made for themselves were they able to do so. The Dr is incorrect in saying the family should all come to some consensus. It is not about family consensus it is about what anyone might know of their wishes. If a sibling came forward and said that he had talked with the patient about, say, refusing a PEG, and no-one had instances of other opinions then that should weigh heavily in the evidence basket.
Having trained in this Act and conducted assessments under it I seem to remember that the the opinion of the relative closest to the person being considered should be given great weight and that the evidence needed to gainsay their view needs to be strong indeed. By close I mean carer, 'lives with', 'spends a lot of time with'. Not genealogical closeness. But this is only after Capacity is shown to be lacking for that decision.
I think it was Manchester Social Services, some years ago, systematically overruled the nearest relatives views when they saw fit and the last I heard the Judge was looking a a fine in excess of £200 million. It is grave stuff.
Were I to have a conflict with a Doctor on Capacity I would ask him to repeat the test with me present and I would ask questions and encourage the loved one as well. This is not a medical exam and the Code of Practice points out that this it is good practice to involve close relatives. Make notes too. The questions and the answers they do not have to be word for word. Your notes may be valuable evidence later on. Also note the names and roles of everyone present, that is standard practice. Just pass a piece of paper around and ask them to put their name and title on it.
Failing that I would ask him to talk me through the notes he has made on his capacity test in the medical record. Wait for the sharp in-drawing breath... the test and recording it is obligatory if there are sufficient doubts and many medics just write 'Has Capacity' Not good enough. Also if a relative is saying 'No Capacity for this decision' then a formal Capacity Test should be re-done.
The link lists the five things the person must be able to achieve in order to have capacity. The 'retain the information' one is often misunderstood. It is to retain the information long enough to weigh it and then to make a decision.
#1 If all else fails ask to see the PALS worker - Patient Liaison Service. Most hospital have one, or more on duty. (Think complaints resolution before things escalate). They would move very quickly and have fast access to very senior people. For a Capacity query on a major treatment you should find they would be straight onto it the same moment. I have seen this in action... effective.
I have got POA for health and finance for S. Did it myself at a fraction of the cost. You are only allowed to apply, if the person IS capable of signing all the forms. I think if they have gone past that point, solicitors and all sorts have to get involved and is very time consuming.
My sister and I also have POA over our Mum. We actually used the health one to get her into a home, due to her having Alhzlmers and her partner was not looking after her. Became a safe guarding issue.
Just because there is a POA in place, it can't be used, if the person is still capable of making decisions. I feel it's like an insurance policy, better to be safe than sorry!
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Do I have PSP? What else?
I am new here although I have been following you for a few months
My David struggles no more
