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Mandatory instructions for action when somebody dies

Posted in: Let's get talking | Discussion and debate

2-Oct-2012 8:07 am

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2-Oct-2012 3:12 pm

above should read 'legally responsible'

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Yes But

Yes But

Posts: 2

17-Nov-2012 3:26 pm

It is definitely easier if people do this - but I don't think you can force them to do it.

Making a Will is a good palce to start, and then you can leave a few notes about other wishes, etc, alongside the Will, and also put yourself in the place of your executors and check that you are not making life difficult for them in some way you had not really thought about.

But a lot of people don't like spending much time thinking about their own deaths, so I think this is another problem much easier to see than to solve !

I can say that in my own experience, Probate Offices are very helpful - but banks, etc, can be seriously annoying !

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michael stone

michael stone

Posts: 145

20-Nov-2012 3:26 pm

I am sure that people who leave behind well-ordered affairs, and clear instructions about things such as their funeral, make it easier - sometimes much easier - for the people they leave behind.

But I doubt that this could be made compulsory, any more than 'exercise enough' or 'don't eat too much junk food' or 'be nice to people, not nasty' could be made compulsory.

Especially as many people shy away from thinking about their own deaths.

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Penny Nibbs

Penny Nibbs

Posts: 2

30-Nov-2012 10:17 pm

There are a few people who leave everything in apple pie order when they die, but the vast majority either die when they were least expecting it, or hadn't got round to sorting out those troublesome things which cause problems with the family.

By the time the ones who"don't just drop dead", face up to the need to sort out their affairs many of them just don't have the strength to do it, in my vast experience on this matter.

Its an entertaining idea to make these things compulsory,(I can see a new kind of job/role for the better organized amongst us, to chase these people up and get their minds organized... something more for the District nurse to do perhaps?) but it says more about your frustrations with the dead person leaving chaos behind them. Just remember that they are being kind, not stipulating anything at all. They are giving you a free hand to do exactly what you like as far as their affairs are concerned.

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michael stone

michael stone

Posts: 145

4-Dec-2012 2:57 pm

Penny Nibbs, as you seem to beleive that Millie Mole has been caused a problem by someone's death, I'm not sure it is awfully helpful to post:

'Its an entertaining idea to make these things compulsory'

as a comment - strikes me as unnecessarily insensitive ?

And there is no kindness, as such, if you are left to deal with a huge 'mess' after someone has died: yes, some freedom of action, or confirmation that the deceased wasn't worried by how some aspect was dealt with, is 'kindness' arguably - but leaving someone in the middle of family arguments or really complex financial problems, isn't in my opinion an expression of kindness (at least not if the deceased understood the situation).

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Penny Nibbs

Penny Nibbs

Posts: 2

19-Dec-2012 6:27 pm

Mike Stone,4-Dec-2012 2:57 pm

I think you are probably standing on one side of the fence and i am standing on the other.

My professional career has been predominantly working with the dying patients and their relatives and so as a Nurse, I know that it is unrealistic to expect everyone to have grasped the nettle of their death before they die. Most people actually don't and can't.

Death is very scary for many people and they just don't want to have to deal with it, no matter how much of a mess this leaves their families in.

I think you need to be a bit more flexible in how you interpret the dead persons actions or inactions, if you want to come out of this sane. Otherwise it will probably eat you for ever. it would be a shame if this was the case.

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michael stone

michael stone

Posts: 145

20-Dec-2012 3:46 pm

Penny,

I'm not persuaded that we are standing on opposite sides of this particular fence: I entirley agree with your comment

'Death is very scary for many people and they just don't want to have to deal with it, no matter how much of a mess this leaves their families in.'

I also agree, with your other comments in that post - however, I still consider your earlier post was strangely insensitive from a HCP.

I have many issues with professional behaviour and guidance around death, but the one this piece set out to discuss isn't among them.

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Anonymous

Anonymous

27-Dec-2012 4:11 pm

it seems this could be the way we are heading in the future. Whilst it may be reassuring for some it is at the same time scary as others may be forced to make decisions they are not ready to make and there is money in it for solicitors, financial advisers and those who do not have immediate family to act on behalf of their relatives or close friends.

forms are already being printed by medical associations in some European countries but hopefully their completion will be purely voluntary and patients will not be made to feel that they are obliged to fill them in or made to feel guilty or inferior or bad about themselves, or given a life full of worries if they do not wish to nor must they be expected to discuss or justify their reasons if they do not wish to.

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michael stone

michael stone

Posts: 145

28-Dec-2012 3:46 pm

27-Dec-2012 4:11 pm

'forms are already being printed by medical associations'

? Saying what ?

In England, our medics cannot even get their template ADRT forms to fit the law properly - it is very unlikely that we will have any law, requiring people to 'prepare for death' properly, in my opinion.

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Anonymous

Anonymous

28-Dec-2012 5:31 pm

Mike Stone

as I said in my post above forms are now being printed in at least one European country. what you choose to do in the UK is your problem.

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Anonymous

Anonymous

28-Dec-2012 5:34 pm

no ideas what template ADRT forms are - I wish you wouldn't talk in riddles and meaningless abbreviations.

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Anonymous

Anonymous

28-Dec-2012 5:35 pm

ridiculous you can't edit posts here or add anything but I would add that once something starts in Europe it usually starts the ball rolling in the UK and vice versa.

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michael stone

michael stone

Posts: 145

29-Dec-2012 10:06 am

28-Dec-2012 5:31 pm

I asked about the content of these European forms, nothing about national choices re their existence.

28-Dec-2012 5:34 pm

ADRT = Advance Decision (to refuse treatment).

The abbreviation is pretty standard, but I will admit that unless a person is vaguely familiar with English law re 'dying' the person would not have heard of ADRTs. They are part of the Mental Capacity Act (MCA) - sections 24 - 26 of the Act explain what an ADRT is, but current secondary guidance is in my opinion describing ADRTs incorrectly. They are the 'legally-defined' version fo the Living Will concept.

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Anonymous

Anonymous

29-Dec-2012 10:14 am

Michael Stone

28-Dec-2012 5:31 pm

these forms are being introduced in my European (non-EU) country by law at the beginning of the new year and as I say other contries will probably follow suit and the equestion is whether one day they may be enforced and would this be a good idea?

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Anonymous

Anonymous

29-Dec-2012 10:26 am

M. Stone

re your comment above?

does this mean that dying and how people wish to organise it is now considered a mental health disorder in UK?

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michael stone

michael stone

Posts: 145

29-Dec-2012 2:13 pm

29-Dec-2012 10:26 am

The Mental Capacity Act is NOT about mental HEALTH, and a person can sometimes possess mental capacity for the purposes of the MCA even if also suffering from a mental illness. Mental CAPACITY is basically just the ability to consider information and to arrive at a decision (even at a 'stupid decision'). Mental illness might negate mental capacity, but it depends on the illness.

The MCA intended to cover decisions made for people who are unable to make their own decisions, and the relevance to end-of-life situations is that the MCA in principle allows patients to decide about future treatments (such as whether they would forbid attempted resuscitation) while the patient is still mentally capable.

But, there are many problems with its current interpretation by most clinicians: partly these arise because it also applies to situations such as long-term dementia, but in part there are other problems which seem to stem from things such as 'legal nervousness' and logically unclear thinking - for many patients, the MCA is clearly seeking to extend patient self-determination into anticipated future periods of mental incapacity, but contemporary clinical interpretations are often befuddled and perverse.

You can download a file of some surveys I carried out from:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?forumID=45&obj=viewThread&threadID=667

and there is an enormous amount of confusion, and very little joined-up 'thinking/belief', in this area of practice/belief.

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Anonymous

Anonymous

29-Dec-2012 2:20 pm

M. Stone

it seems that the difficulties arise out of the fact that everybody's circumstances are different and end of life for any individual cannot be determined. Put together with the governments determination to determine how everybody should be treated it is probably an area left well alone so that individuals can be free to live their own lives as they think fit and obtain individudally patient centred holistic healthcare as and when needed as was previously the case. ticking boxes and filling out yet more forms can only lead down a very icy slope to disaster for many.

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michael stone

michael stone

Posts: 145

30-Dec-2012 12:23 pm

29-Dec-2012 2:20 pm

Yes, every end of life is different, especially for patients at home. As for European 'law/practice' spreading to England, English law isn't even the same as Scotland's law.

Unfortunately, if you are living with someone who has decided to refuse attempted resuscitation for a ‘sudden CPA’ (an arrest which could NOT be certified), currently you are in an impossible situation. This would be the problem facing an elderly wife, if her elderly but apparently healthy husband had decided to refuse attempted CPR ‘if my heart has stopped for any reason whatsoever’.

Also, currently live-with relatives are treated more as suspects than as full partners in the care of End-of-Life patients (where EoL means ‘expected to die within about a year’) and personally I find this ‘attitude of distrust as the default position’ totally unacceptable !

As a hospice doctor wrote in an e-mail to me on December 20th:

‘The interesting issue is the validity of conversations within the family compared to those with healthcare professionals – and this is something of interest to you and me!

If informal carers are really the new healthcare professionals, to support the dying at home agenda, then we need to trust family members, have confidence in their caring and communication skills and see them as co-partners in the team as you suggest – I think Canada is way ahead in their thinking. In the UK we are more mistrustful of motivation and sadly this leads to increased suffering.’

I don’t think family carers are ‘the new HCPs’ – but it has to be accepted that live-with relatives will often be told by a patient of the patient’s decisions, before anybody else (simply because the relatives are normally present, and clinicians usually are not in the home). So you’ve got to change this, to an ‘inclusive and trusting attitude’ for EoL at home to make any sense !

Another Consultant in Palliative Medicine recently stated to me:

‘In the absence of a DNACPR the actions of the professional and the relative may be different. The relative will follow his father‘s wishes because the relatives’ default is the father‘s decision.
Unfortunately the NHS has a default position for CPR, the only treatment to have a default outcome. The consequence of this unsatisfactory situation is that a professional will almost always start CPR in the absence of a DNACPR. This is despite national guidance advice to professionals that they are not obliged to start CPR if they are clear it could not work or if there is clear information that the patient would not have refused. The acknowledged difficulty is that inexperience and/or a fear of litigation will drive many doctors and nurses to start CPR.’

Now, ignoring that it isn’t the outcome of CPR that is a default (the default applies to the decision about whether or not to attempt CPR, and this default looks very legally dubious for known very elderly or EoL (‘final year’) people), that behaviour isn’t exactly a secret: you can work it out, by tracking down CPR/verification of death policies on the ‘net.

So if you know your husband would not want attempted CPR if he has arrested, you think he has arrested but you are also aware that if you call 999 to get a paramedic to check if he has arrested, then the paramedic is likely to attempt CPR if he has arrested, what the heck are you supposed to do ???!!!

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The Nobody

The Nobody

Posts: 7

24-Jan-2013 9:14 pm

I am a senior NHS manager, a scientist and a daughter. My dad died a hard death several years ago and we could not have coped without the support and advice from senior nursing staff. He had written a will and done all sorts of process things that meant sorting out his affairs was straightforward. But the way he chose to die was very hard. He refused all support from our family, rarely let us into the house, fought any help I tried to get him like cleaning or meals, never went to his GP and it was only the miraculous skills of our community nursing team that he had any care at all. I learnt a lot about life and myself and all sorts of things during that time. One of the most profound was something his SpN said to me, which was we all have a choice about how we die. I'm all for women choosing how to deliver their baby or other lifestyle choices we all make, but that had never occurred to me before. I stopped trying to force him to do what made me feel less guilty as a daughter and when he eventually died, we were all with him.
So yes, we are all responsible for our death and relatives matter but people should have choices about how and where they die. Families and careers have to respect that but it is hard, e.g. when he refused an NG tube. A good nursing team made all the difference in the world to us and I use every ounce of my small power in my job to support the profession.

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24-Jan-2013 10:14 pm

The Manager

Thank you for sharing your story which you have expressed so sensitively and eloquently and which gives much food for thought.

My father died very suddenly aged 81 when he collapsed on a very cold February day on the tennis court when he was serving a couple of games into the second set of mixed doubles having just won the first with his partner. He was fortunate in that his tennis partner was a senior nurse and close family friend who was able to cope well with the situation, and during my absence abroad had the kindness to go and break the news to my mother just round the corner from the tennis club and then quickly go home and fetch her things and a sleeping bag and returned to stay with my mother until I managed to return home the next day. She didn't wait for an invitation and didn't need one. We were lucky that my father, a consultant and former department head for over 30 years at the local hospital, had left his affairs in impeccable order and everything was neatly filed and with all his records noted in a ledger. Sadly my mother (also a former nurse who served as a sister in the PMRAFNS during WWII) died 16 months later, aged 85.

Having looked after many dying patients and witnessed the many different reactions of members of their families I have concluded that at present I am not ready, beyond leaving a will, to decide how I will be treated following a serious incident or when I am dying although I now realised fairly recently I would not want to be resuscitated or put on life support. However, although directives can be changed at any time, I find it difficult to make such a decision and put it on record when one is fit and well as one has no idea how it will be when one is in such a situation or near the end of life and when the time comes one may feel totally differently about how one wishes to be treated. I have seen very sick patients, even at advanced old age who haven’t been ready to die, put up a very strong fight and also those who have managed against all the odds with good care to survive and it would be a tragedy in such a situation if they had just been left quietly or even assisted to die.

My question above arose from all the controversy not long ago in the press, followed by numerous comments expressing a very wide range of views, surrounding assisted suicide, euthanasia, pushing for such directives or being earmarked by the GP for the LCP, palliative care or as a patient near the end of life and for organ donation. Many commentators appear to perceive the authorities are being accorded increasing rights to intervene in our personal lives which include what care we should receive and how our lives should end, etc. From this arose my hypothetical question as to whether it could ever become an obligation to file such a set of directives with, for example, our GP surgery or record them on an electronic data base along with our other medical notes.

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