There is a serious problem with the term 'Expected Death'
There is a serious problem with the term 'Expected Death'.
Patients who decide to die at home, can die within one of two clinical situations, if the GP certifies their deaths.
Some patients have become so ill, and so 'near to death', that the GP can effectively make a promise 'that I will now certify any natural death, WITHOUT EXAMINING THE DECEASED'. This is 'an expected death', and once a GP has indicated that, then Coroners will allow trained nurses to deal with the post-mortem formalities on their own, if the GP cannot attend the death - so for expected deaths, District Nurses can verify the death and arrange for the body to be removed.
But before a patient is that ill, many patients do die from the illness - but in this case, the GP needs to attend the death and examine the deceased, before deciding whether to certify the death.
This is currently very problematic for the relatives of the deceased - far too many paramedics and police officers, 'think of' those somewhat earlier deaths as being 'sudden', and consequently behave far too suspiciously and aggressively.
This is my question: as well as indicating in the patient's notes the time when a death has become 'expected', should GPs ALSO indicate in the notes the EARLIER stage of deterioration, after which 'I would no longer be surprised if the patient died' ?
Best wishes, Mike Stone
PS I suspect views about this might be rather 'role specific', so if you are kind enough to answer, please include your role (district nurse, relative, etc).
In answer to the question, some patients are identified as in the' last year of life' by use of the question 'would you be surprised if this patient were to die in the next 6 -12 months ' This is part of the Gold Standards Framework system in Primary care that coordinates the multidisclpinary care of these patients and is part of the national End of Life Care programme. Currently Luton GPs have identifed 400+ pts
However we are currently under identifying these patients significantly ( by at least 25% often much more) Also communication as ever is problematic; DN and GP may know patient is identified End Of Life (EOL) but not always others especially OOH.services and Hospital
' Expected Death' is used in a general way and may be indicated by such things as having conversations with patient and/or family about prognosis or outcomes of treatment, or 'futility of further treatment' , discussing wishes and preferences for future care (Advance Care Planning) .
I recognise the issue of 'suspicious and / or aggressive behaviour ' and agree this can be of great distress to relatives . This would be helped by education so that individuals are able to identify a natural occurance rather that rely on a blanket protocol that requires them to treat many as suspicious. It is particularly difficult for the Ambulance Service whose remit is to save life obliged to attempt CPR and can't verify death.
Inappropriate CPR is another distressing event and is certaintly not a dignitified death.and sadly not infrequent Where CPR is clearly medically futile clinicians need to inform pts & family and explain the need for DNACPR order in advance of need.
I sent the same question out to Champions, and this reply from Jackie illustrates many parts of the problem. The problem is that CPR/VoD policies do not properly define what 'expected death' must mean, for home End-of-Life situations: the only sane definition, is that 'an expected death is when the GP has promised in advance to certify any apparently natural death, WITHOUT ATTENDING the death' because with that promise to hand, the coroner will allow trained district nurses to verify the death and deal with the removal of the body ON THEIR OWN. But those trained nurses are NOT supposed to be 'pseudo certifying' - those nurses are NOT supposed to be connecting the death to the known illness, although many nurses think they are supposed to be doing that (coroners are being very unhelpful, for reasons which are somewhat understandable - but this 'coyness' isn't acceptable, when it has damaging consequences for just-bereaved relatives).
The reply (below) highlighted many of the problems, and in particular it puts a 'real-world' example to one of my 'thought experiments'.
Jackie wrote:
'who nursed my husband for over four years with a cardiac condition which meant that he could die at any time'
and you are a retired nurse, so it is reasonable to believe your opinion about 'meant he could die at any time during 4 years'.
Firstly, as the NHS uses 'expected to die within 12 months' as its basis for EoL, your husband would not have been EoL.
But secondly, I like to test 'belief sets' by using thought experiments - I create an illness, and see how an invented illness would fit with behaviour.
One of my favourites, is to look at how a hypothetical illness which had a fixed probability of death on each day, and didn't get 'worse' if death had not occurred, can be made to fit in with 'expected death'. It is possible to think of some medical conditions which approximate to that hypothetical illness.
The question is, if for every day the person is still alive, he has a 1-in-X chance of dying, and you define 'expected death' as 'the GP will allow nurses to verify the death and arrange for the removal of the body without the GP or Police attending post-mortem', what value of X is the upper limit for 'an expected death' ?
Obviously, very small values of X - 2, 3 etc - are an expected death. But what about something like 50 ? If a patient has a 2% chance of dying tomorrow, does that mean that the GP would be willing to write 'I will certify this chap's apparently natural death, even if I can't attend post-mortem ?': I wouldn't have thought so. But that isn't an unexpected death, either, is it !
If 2 or 3 times as many patients are to be allowed to die at home, this has got to be sorted out, by incorporating the 'complexity of dying' into overall professional behaviour - you can't have different professionals ignoring the things which are inconvenient in terms of their own objectives, with the effect that just-bereaved relatives are the parcel in a game of 'kick the parcel' !
Best wishes, Mike
Jackie's email reply to my question follows
With more people wishing to be cared for in their own home and NHS/Social care providing more locally based home services this situation of 'Expected Death' needs debating fully to ensure that the person concerned is not subject to abuse. Also that relatives and loved ones are not put under emotional trauma due to, as you describe 'suspicious/aggressive behaviour'.
From the point of view of a carer who nursed my husband for over four years with a cardiac condition which meant that he could die at any time, I was distressed that when he did die, a police officer had to stay in the house until a doctor could be found to confirm death which took about five hours. As he had not seen a doctor for the past two weeks it meant that a post- mortum was performed.
However as a retired nurse I am well aware that not all relatives are as caring and if there was a motivation of benefitting financially it could be easier to hasten the death if controls are not evident.
All aspects must be considered.
Hope this helps
Regards
Jackie
Jennie, I will post something further about this area, later today when I have some more online time - I am very annoyed by the behaviour professionals seem to think is appropriate, at present, when I read things like CPR/VoD protocols as a relative !
Jennie, it is the most difficult/unsatisfactory for paramedics and relatives - there is no argument about that, and many paramedics are unhappy about the situation. In fact, the Grandfather Scenario described below, originated from a senior WMAS paramedic, and he describes it as 'a huge problem'.
During known EoL at home (as in 'expected to die in 12 months or less') the GP should indicate, at different times and in this order, 2 things in notes, because ONLY THE GP KNOWS these 2 statements:
a) 'You are not to regard any apparently natural death from now on as being 'sudden or unexpected', but I need to personally attend the death before I decide whether to certify it'
b) 'I am now happy for suitably trained district nurses to verify any subsequent death, unless it is obviously unnatural, and for them to arrange for the removal of the body without my attending the death'
Statement b) {which is NOT the same thing as a DNACPR instruction, although they often coincide} equates to 'this is an expected death' (which loosely equates to the GSF's final period on its timeline {not counting 'after care'}).
Statement a), which nobody actually records, but which is necessary, covers 'the patient is now very ill, might die, but I cannot say will definitely die in the next few days' {loosely the GSF's 'weeks to live' period on its timeline}.
One covers 'death is so imminent that I don't need to see the body' and the other covers 'a natural death would no longer surprise me'.
I have been discussing these EoL issues for 2 or 3 years, and I think I can now prove/demonstrate/argue:
1) That Grandfather's (see below) ADRT needs sorting out, urgently ! It seems that everyone except some clinicians, agrees that he could write an ADRT which refuses CPR 'despite how ill he was known to be, and irrespective of the cause of any CPA'.
But we need to see some agreed wording published, which people all know will mean that any clinicians reading it will accept means 'the cause of condition, wasn't a factor in the refusal'.
2) The Police are going to struggle to cope with 1) - the Police seem to want to know;
a) Why people die before an autopsy (often impossible, and sometimes unknown even after an autopsy)
b) What happened when they weren't there, without taking the word of people who were there.
BOTH ABSURD - I'M STILL WORKING ON THAT ONE !
3) I think it cannot be disproved, that 'normal but informed relatives' CAN make section 4 best interests decisions (ie it cannot be disproved, that the son in Father and Son (see below) can decide he shouldn't risk calling 999, and then defend himself via 4(6) and 4(11) of the MCA). This is disputed - I am sticking to my opinion, that the MCA does not give decision-making powers to anyone except welfare attorneys and court deputies, but imposes duties on anyone caring for the patient.
4) Far too many clinicians, including some of those who should understand the MCA, simply don't 'get it' !
Basically, if I were a clinician (I'm not) then at the moment I would be embarrassed by the existing 'belief and behaviour set' around End-of-Life, especially within the patient's own home, and I would also be rather nervous of some potential legal consequences of attempting CPR, 'against a patient's expressed wishes'.
The 'test of the day' for NHS behaviour, is The Relative Test. If it was your own father dying at home, and your own sister caring for him in his home, would you yourself be satisfied by how your sister was incorporated into existing NHS guidance, and how she was treated by paramedics and police if things became confused ?
The two scenarios which follow, are not being dealt with properly, if you read Grandfather as a patient, or Father and Son as a relative !