What is Expected death and what is a DNACPR Form

16-Feb-2011 11:07 am

Hello
I appreciate you are asking for opinions from district nurses, but I wondered if you are also looking at this from the care home environment approach also. Resuscitation issues in this speciality are also in need of attention, from the NMC,RCN,BMA as well as the DoH. Presently there are nurses left vulnerable, often due to GPs being unwilling to make a decision based on clinical status, this can lead to inappropriate attempts to resuscitate - inappropriate hospital admissions, or nurses making decision not to resus, which if documentation is not available at time of death could lead to allegations of abuse/manslaughter. With talk of GPs getting control of budgets to an even greater extent I am very concerned that end of life care of the elderly needs greater cohesive working than is presently evident, at least in many instances. This is unfortunately not addressed, therefore not being seen as so important. Until greater awareness and direction is achieved the elderly will continue to be in a lottery with regard to dying with dignity, and the staff put at risk.

16-Feb-2011 1:06 pm

Hi
I didn't respond directly to your questions as unclear whether it would be of any benefit to you if you weren't considering them from a care home perspective, my answers are below, but they would require further detail to fully explain my position. I hope though they are some interest.

Is it always true, that CPR should not be attempted, if a death is 'Expected' ?
I believe there are situations where death is expected in the near future - but an acute situation such as choking occurs that requires attention to prevent an avoidable shortening of life, but is not prolonging life that ended 'naturally'. I have known of a situation in an ITU where the ventilator was due to be switched off in a few hours time following a visit from husband and children, the lady was resuscitated to allow them the opportunity to say goodbye to her. Whether this is ethical is questionable, but I believe it was on balance right as it benefited a vulnerable family.
Generally I think it unwise to resuscitate someone who is actively dying, and for whom the chance of survival at all is very limited, yet alone survival in a worsened condition. With advances in medical developments and a belief that doctors should save everybody, reality and awareness that they also have a duty to do no harm - which by allowing treatment that has a poor prognosis, is not being adequately taken into account.
Having said that I appreciate we all have a right, if got the capacity, to act autonomously, and that paternalism is not the best way to deliver this 'person centred care' we hear about. Advance decisions therefore are a good way forward, with a legal obligation on professionals to respect them if they meet the criteria set down in the mental capacity act - the problem is that not enough people seem aware of, or know enough about the topic, including the ethics and laws, to interpret, guide and administer patients' wishes. Fear of litigation leads to denial or delay in accepting advance decisions to refuse life sustaining treatment, a big issue when it could be greatly helped by the GP making a decision, or validating a DNACPR document. PCTs also need to work quicker and more efficiently, with their colleagues in the community as well as within the hospitals, in order to address this. Ambulance crews are resuscitating people that are clearly dead, as the bit of paper is not in place????we need more people understanding that this is a big issue, not fear of being seen as organisations with blanket policies of DNAR...I believe every individual should have a decision made, whether to resuscitate or not to, but made in the full knowledge of the facts if the person is autonomous - otherwise the actual decision would not be autonomous, and if someone lacks capacity then the GP must make a decision - not say well the staff know them best, and no-one will proscecute...not the situation. More training, greater awareness within the profession, but also within the general public is required to move this forward.

2 Does the existence of a valid DNACPR Form/decision, automatically indicate that if the death is from a natural cause, it will be an 'Expected Death' ?
It is important that all reasonable care that will benefit a patient continues until death. An advance decision to refuse life prolonging treatment, where made, must be respected. Problems occur if people misinterpret the need to palliate the symotoms, and think it acceptable to not consider each symptom and the best interest of the patient at all times.
If the death is expected staff need to be aware of the dying trajectory and expected outcomes and symptoms - all staff must be attentive to not missing any treatable cause of deterioration just because a form is in place....just as if someone says they do not want hospitalisation / want to die in the care home - has a dnar form in place, but actually not recognise this is not a dying phase.
Much work is being done, however the nitty gritty, i.e of advance care planning (especially with dementia patients) is not being addressed in enough detail for them to be as useful as they could be...even those promoting them appear at times to not understand the reality of being in the position of needing to be clear about how to meet the wishes of the patient, but remaining professionally safe - having discussed in brief this with people from various organisations it would be nice to know that common sense will prevail, and people will listen.
I appreciate these answers may still not be what you are looking for - but I wish you well. It is a subject I feel very passionate about, and spend much time looking at.

18-Feb-2011 10:02 am

In response to the post by 'anonymous' at 16-Feb-2011 1:06 pm.

The reason I dipped a toe into online discussions, is because I wanted to get a handle on the 'belief set' of typical nurses - but you are not a typical nurse, an more than I am a typical ex-family carer. We have both thought about this, so fall into the 'expert' category.

When you wrote ' but an acute situation such as choking occurs that requires attention to prevent an avoidable shortening of life, but is not prolonging life that ended 'naturally'' I am not sure if you have read this, on page 8 of the current Joint CPR Guidelines (those guidelines are about to begin a revision process, by the way): 'Uncommonly, some patients for whom a DNAR decision has been established may develop cardiac or respiratory arrest from a readily reversible cause such as choking, induction of anaesthesia, anaphylaxis or blocked tracheostomy tube. In such situations CPR would be appropriate, while the reversible cause is treated, unless the patient has specifically refused intervention in these circumstances.' This clearly indicates that a patient CAN have refused CPR, for a CPA which is 'readily reversible', IN ADVANCE. I have never seen a DNAR Form, which makes that clear (the 'Main Messages' section of the guidance, is misleading in this context).

It is less than clear, whether a doctor 'must' attempt CPR, unless it is absolutely 100% certain that resuscitation would fail - I believe that section 4(5) of the MCA, means that if CPR might sustain life of 'poor quality', it is much 'safer' to ask the patient for a refusal. This could apply, anyway. Suppose the prediction is that even if attempted CPR did work, the clinical outcome would be so poor, that almost all patients who could 'see the outcome' would refuse. One particular patient, might say 'I understand that. But I had a huge falling out with my daughter last year, she is currently trying to return from Central America, and I would like you to attempt CPR, if it would give me any chance of talking to her, before I die'. This could, if the doctor agreed, lead to a situation of both 'expected death' and also 'attempt CPR'.

I am very strongly with you on this: 'Advance decisions therefore are a good way forward, with a legal obligation on professionals to respect them if they meet the criteria set down in the mental capacity act - the problem is that not enough people seem aware of, or know enough about the topic, including the ethics and laws, to interpret, guide and administer patients' wishes.' The rules in the MCA for ADRTs are very clear, but not as described in most clinical guidance. An ADRT must specify the treatment being refused, MAY specify qualifying circumstances, and NEED NOT provide an explanation, as to why the patient is refusing the treatment ! This is NOT how the rules for ADRTs appear within much of the clinical guidance – clinicians keep trying to ‘second-guess’ the patient’s motivation. And there is no reason why a qualifying circumstance, need be clinical: 'Do not attempt CPR, after my new Will has been finalised, signed and witnessed' is a perfectly reasonable 'order' !

When considered properly, an ADRT mirrors the normal process of face-to-face Informed Consent/Considered Refusal, which was described thus in section 14(c) of last summer's GMC guidance:
'The patient weighs up the potential benefits, burdens and risks of the various options as well as any non-clinical issues that are relevant to them. The patient decides whether to accept any of the options and, if so, which. They also have the right to accept or refuse an option for a reason that may seem irrational to the doctor or for no reason at all.' The doctor describes the clinical factors, the patient incorporates these clinical factors into his own 'world view', then the patient decides if he wishes to accept the offered treatment: and the patient need NOT explain why he is accepting, or refusing. An Advance Decision, exists for indirect communication (to cover a future situation, when you have not had such a face-to-face discussion, with the clinicians treating you) and, despite some clinicians believing the contrary, an ADRT does not exist primarily to RECORD a patient's decision !

Your post is now becoming almost as heated as some of my stuff gets - but I do not agree with this: 'and if someone lacks capacity then the GP must make a decision'. If a patient lacks capacity, and has not already covered CPR, in my opinion the situation requires the clinical team to provide clinical prognoses to 'relatives' (a term intended to cover all of the people, with enough life experience of the patient, for them to 'try and work out what he would have said, if we were somehow able to ask him') - then it gets quite complicated ! Nobody within clinical literature defines the MCA's best interests test for CPR, but if it is to be consistent with Informed Consent/Considered Refusal, and Advance Decisions, and section 4(6) of the MCA (which keeps reverting to 'patient's wishes/beliefs') then it simply must be this:

’If I am certain beyond reasonable doubt, that this particular patient, if he understood the clinical consequences of attempted CPR, would refuse CPR if he were somehow able to refuse CPR during the CPA under consideration, then I must not attempt CPR: otherwise, I must attempt to preserve his life‘.

I claim (because sections 1(5) and 4 of the MCA say 'person') that ANYBODY can (in fact, if deeply involved with the patient, must) apply that test, and it must be applied in two parts, thus:

A) Do I understand enough, for me to defensibly consider the Mental Capacity Act’s best interests test (for CPR, that is ‘am I certain beyond any reasonable doubt, that the patient himself would have refused CPR, if he were able to do that during a CPA’) ?;

B) If I believe that I am sufficiently knowledgeable to consider the best interests test, I must act on the basis of what I consider the patient would have said if he were asked directly and he were able to answer (here, ’do you consent to CPR being attempted ?‘): otherwise, I must attempt to preserve the patient’s life.

And I also believe, that these three default assumptions must also be written into belief and behaviour:

1 Clinicians are the experts about clinical factors, such as prognoses;

2 The relatives are the experts on 'what the patient would have said';

3 It must be assumed that everyone is acting honestly, and to the best of their ability, until it has been reasonably proved to be otherwise.

So in my opinion, both grandfather's wife (usually referred to as 'nan') and the son, if they consider that grandfather or father has stopped breathing, can quite legally NOT CALL ANYONE - they must be allowed to honour their relative's wish, to be allowed to die in peace (after which section 4(9) of the MCA, and the Human Rights legislation, come into play).

But I strongly agree about aspects of this, which you wrote: ' not say well the staff know them best, and no-one will proscecute...not the situation.' My mum had been dying at home, comatose, for several days before she finally died, and because the GP took a Friday off, my mum died somewhat before I was sure the Surgery was open, and this situation was very confused, I ended up in something of a confrontation with 999 (something of an under-statement !). It is very complicated, and lengthy to properly explain - but the behaviour of the Police, when they are confused, totally defies logic ! But my position is that whoever actually talks to a patient, is best-placed to be up-to-date with ‘the patient’s wishes’: at home, this is the relatives(s), in a care home, it is possibly the staff/nurses (but not necessarily – it simply depends, on who the patient does talk to, about his wishes,) but it is almost NEVER paramedics, and it IS NEVER the Police ! So my position, is that nurses and relatives must be believed, as the default position – not, as you seem to imply, that those people must be told what to do by someone other than the patient.

However, unless you do something much more obviously wrong than 'making an honest mistake', I don't think a nurse would be prosecuted - I don't think Coroners are, typically, idiots. But you could well get 'beaten up' (not physically, but in terms of overly aggressive questioning, etc) by the Police !

One serious problem, here, is the difference between 'expected death' (which is entirely related to the local Coroner's requirements for post-mortem behaviour) and 'the CPR decision' (which must be made in accordance with the law, which in England is the MCA). They are two quite different things - a DNACPR decision/instruction is NOT the same thing as an 'expected death'.

The simplest way to think of an 'expected death', is as a death which the GP has already 'effectively promised to certify as natural'. Nurses are allowed to verify these deaths, because the GP has already said 'if the death is natural, I will certify it'. All the nurses are really doing, is checking for a natural death - nurses are NOT 'linking the cause of the death, to the known underlying illness' (although it seems most believe, they are doing that). 'Linking a natural death, to a known illness/prognosis' is the process a GP does, if the GP attends the death and the GP is deciding whether to certify the death. A GP certifies as natural, lots of deaths which cannot correctly be described as 'expected', and which nurses could not therefore verify alone.
I am fine with that - but those 'somewhat earlier but probably still natural' deaths, are currently described as 'sudden' or 'unexpected', and THAT IS VERY WRONG !

Alternatively, you could think of an expected death, as one which 'the GP, having been called out to the death, would expect to certify as natural when he arrived'. The 'somewhat earlier deaths' are those 'when the phone call, saying the patient had died, would not really surprise the GP'. And proper 'sudden' deaths, are those which 'the GP, having been called out to the death, would feel he would probably not certify when he arrived'. There are 3 types of EoLC deaths, not 2 !

When you wrote ' Problems occur if people misinterpret the need to palliate the symotoms, and think it acceptable to not consider each symptom and the best interest of the patient at all times.' there is, I think, a lot of over-simplification going on within clinical behaviour - decisions need to be made individually. As I pointed out previously, in the grandfather scenario, grandfather is refusing treatment if he is in CPA - but he is not refusing active treatment, if he has a condition which would leave him alive but damaged: clinicians should be able to understand this stuff !

This ' to not understand the reality of being in the position of needing to be clear about how to meet the wishes of the patient, but remaining professionally safe - having discussed in brief this with people from various organisations it would be nice to know that common sense will prevail, and people will listen.' is my major problem. By 'being professionally safe' the professionals, are 'using up all of the safety net'. In my scenario where the father tells his son to 'let me die in peace', any morally normal son, who can retain sufficient composure (another area where the evidence is lacking), would just let his dad die in peace, and then call someone afterwards. The Police would then try to cover their own backs, and I see this as a violation of the son's human rights, to be treated properly after his dad has died. The Police, of course, do not agree with me.

I have discussed this fairly extensively, with quite a lot of parties - all I can say, is that many people do not understand it, those who do understand it accept the situation needs improving but do not necessarily agree about how it needs to be improved, and I am still giving serious amounts of 'stick' to many people. I noticed very early, that the guidance for clinicians regarding patient confidentiality, when a patient is incapable, is impossible to reconcile with the MCA’s best interests test (a serious problem for nurses in particular) - I have got the BMA to admit the existing guidance is paradoxical in this area, so I hope it will be sorted out (unless everyone openly talks to everyone else, it is very unhelpful and it can get very confusing).

You mentioned dementia patients - not an easy place to start de-constructing clinical beliefs and behaviour ! I don't know much about dementia - my mum started to 'go elsewhere' as she declined towards death, and I did have one 'strange' thought {it seemed to me, that when my mum was 'away' it wasn't that she was in the present, but with gaps in her memory - it seemed as if somehow, her brain had 're-wound' to an earlier time, so that somehow her mind 'was like it would have been, 20 years ago'} - but for long-term dementia, or minors, or anyone who was not mentally capable until near death, it becomes impossible to easily ask the patient, or for the relatives to act as 'proxy minds'. In theory, nobody is supposed to withhold CPR out of compassion (which is why the GP, or doctor, MUST ask the relatives if CPR might still work - unlike the GP, a relative can say 'If the clinical circumstances are as you describe, then I honestly believe my dad would refuse CPR' and that IS justification for a DNACPR decision, whereas 'I think he would suffer too much, if we attempted CPR' does not appear to be an 'allowable justification' for a DNACPR) and for long-term dementia, it is very complicated. See section 5-31 of the Code of Practice, which states 'They must not be motivated by a desire to bring about the person’s death for whatever reason, even if this is from a sense of compassion.'

There is also the complication that neither the Code, nor other guidance, applies to relatives who are not Welfare Attorneys (because of section 42 of the MCA) - clinicians, and other bodies, persist in writing guidance for patients and relatives, when there is absolutely no legal basis on which to base such things ! Relatives and patients need to only read, and act according to, the MCA itself.

And Welfare Attorneys OUTRANK doctors - very few people seem to have read the MCA's statements about welfare attorneys, but section 6 of the MCA includes ' Section 5 does not authorise a person to do an act which conflicts with a decision made, within the scope of his authority and in accordance with this Part, by— (a) a donee of a lasting power of attorney granted by P,'. Welfare attorneys do not 'speak as if they were the patient' {which many clinicians believe is the case}, but must make the same type of best interests decisions as anyone else (see section 4(8)). But the welfare attorney's best interests decision is almost impossible to challenge – and the MCA itself, does not say that doctors can tell 'normal relatives' what to do, or that normal relatives can tell doctors what to do. The logic, says that if the patient is capable, he should be asked - if he is not capable, then the situation should be discussed properly between the clinicians and the relatives, and a consensus 'proxy decision' might emerge from the relatives: the problem, is it might not lead to consensus (when, in my opinion, everyone must act on the basis of their own consideration of best interests behaviour - that is definable, but looks a bit odd at first). This 'it might lead to a dispute' is the problem - doctors are told 'they are the judge' which is not logically defensible, so doctors are very resistant to discussing CPR with relatives. Which is not at all helpful !

I hope that wasn't too 'heavy' - it is quite tricky to progress an argument of 'you lot are all wrong here' when 'you lot' is the BMA, GMC, RCN, RC(UK), etc ! So although you appear to have worked out quite a lot of this yourself (or all of it), it sort of 'comes out of its own accord' by now !

I was wondering about something, from the ‘tone’ of your comments in places. Have you experienced what I would describe as ‘grossly inappropriate behaviour from the Police’ in ‘death’ situations ?

18-Feb-2011 4:30 pm

Hi
Am posting a quick response, due only to immediate time constaints, but will expand shortly.
I will happily post some comments on this subject, to pass on if you feel they would be useful.
Clearer, workable, guidelines that truly address the real situations that many professionals find themselves in (nurses, doctors - including out of hours, ambulance crew) will ultimately improve the delivery of care for both the patient and their family - which is what everyone involved should be striving for is it not? Greater improvements in the understanding of the legalities and the ethics involved, as well as the clinical skills, is required by many involved - both at policy making and care delivery level.
I am very interested in your comments 'but you are not a typical nurse, any more than I am a typical ex-family carer' - and re. being part of a discussion group feeding into a contact with the BMA, just wondering if you are a nurse (as forum on nursing times), or whether you actually have a legal or ethical background...?

19-Feb-2011 2:19 pm

To ‘anonymous’. I am currently in a library, and therefore online – so I can access my e-mail account. I have shared some of your forum comments with our e-mail discussion group (it lacks a front-line nurse – we have a nurse, but she also lectures on nursing courses at a university, and specialises in the law) and a response from our lecturer (see previous) was this, which may interest you:


I am not surprised at the sorts of responses you are getting. I fear that as a society we have become impotent to use our clinical knowledge to act in any patient’s best interest at the end of life.

By that I do not mean we should make an arbitrary decision not to resuscitate, I mean we are impotent in communicating to patients who have capacity and to their relatives that it may be an idea to consider what treatments would be/not be acceptable if a cardiac arrest occurred, at any stage. More so if the patient has a diagnosis that is progressive and may impact on their capacity later on.

I suspect we fear frightening them or in some way suggesting their condition is worse than it is. We need to initiate consideration for situations that may arise not that most definitely will. We also need to consider the quality of life post CPR if a patient is resuscitated as this is part of the information needed for them to make an informed decision.

As we (royal we) do not like those conversations we find ourselves in sometimes impossible situations.

A clinician may suggest it is futile to resuscitate but not all cases are deemed this so CPR occurs on patients who would rather not receive it at the end of life (or at any time of their life).

I fear we have a mind set that is difficult to alter especially as some clinicians do not appear willing to listen or think they know better.

Equally I am not surprised the ambulance crews resuscitate those already dead; their training is very didactic and they work to protocols rather than anything else. This may be disputed but unfortunately actions appear to speak louder than words. I have been informed that some ambulance services do not acknowledge the LCP as it is not their paperwork! Until their training has a radical overhaul then this may not change.

Each situation is fluid as it is unique to the individual involved, but for some reason the clinicians can’t seem to get the approach right.

I just hope euthanasia is available when it is my turn.
We need a promotion on what advanced directives are, when they can be used, how to get one especially if clinicians are not prepared to accept the word of relatives/ 3rd party of the patient’s wishes/beliefs.

Hope this makes sense.


That was the e-mail – I (Mike) think our lecturer has covered most of the issues, in there ! The problem is how can the necessary changes to ‘mindsets’ be facilitated ? I responded to the above with:

It all makes perfect sense - all of this hinges on perspective and 'proof' issues, as you are fully aware.

But the spirit behind the MCA, and ADRTs, does simply seem to be 'do what the patient would have wanted you to' - 'the system' cannot cope with situations when the only people who understand that, are 'amateurs'. And nobody WANTS to ask 'would you prefer to be dead ?' - I could see that was true for my mum, but only after she wouldn't take medication, was I forced to actually make sure: 'Do you want to go to sleep, and not wake up again ?'. But after you have checked, you do not give a damn about anyone else's opinion, except for your mum's !

Ben's responses, are deeply unsatisfying for me - he is clearly connected with ADRT guidance which alters 'may' to 'must' and then changes the justifications for not following an ADRT from 'we can reasonably suspect the patient would have made a different decision' to 'we don't understand why the patient is refusing treatment' - so it is down to 'him', and any arguments should be with 'him'.

I'm not very sure about voluntary euthanasia: very complicated, but I am sure that clinicians should not be the people who actually 'do it' (in fact, it probably also would need, where possible, the 'firing squad with some rifles unloaded' system).

I'll let you know of my forum question turns up anything interesting,


To ‘anonymous’: the Ben in there, is a consultant who has just failed to say where his online guidance for ADRTs gets ‘the treatment and the conditions under which the refusal is to apply must be specified’ (or a re-wording of that) when the MCA quite clearly makes specifying any qualifying conditions, entirely optional.

I await your next post with interest, and I will explain what happened when my mum died (or at least, the parts which really bother me) after I've typed something up at home, Mike

21-Feb-2011 12:03 pm

I am so sorry to hear about your situation. I hope you got/getting support from your GP, and that your situation with the police was addressed to reassure you that they will be more sensitive in future.
It is very important that adequate communication of both a person's current condition, and their wishes, are shared with all those who are likely to be involved with end of life care. I can't comment so much on the community situation, however if the out of hours services are informed that if a particular practice patient is an expected death and that resuscitation has been discussed, and the decision recorded, and shared, then the paramedics as well as any out of hours doctors should be confident in their actions. It is a problem otherwise, as if 999 is called the expectation is that emergency care is required, without adequate evidence of the actual patient's wishes they are vulnerable. This is why advance care planning, and recording of advance decisions, with a health care professional which is then shared, and a copy kept with the patient, is so important. I hope (and believe) that progress has been made, and whilst there still needs clarity and further training, as well as more cohesive planning between all parties involved in end of life care, including representatives from carers, patients, and other interested parties, continuing communication with those who are able to influence policy is very valuable.

21-Feb-2011 2:47 pm

This is where I would like to start:

It appears, as far as I can tell, that many/most nurses, believe that an ‘expected death’ is the same thing as a DNACPR decision. And it also appears that most nurses, believe that when they verify a death, they are ‘connecting the death to the known underlying illness and prognosis’ (in the sense of ‘does it look as if the illness we knew about, directly caused the death ?’): that is not why suitably trained nurses, are allowed to verify (alone) certain deaths.

Can people – please !!! – shed some more light here, regarding exactly what operational nurses believe in this area, and how those beliefs ‘became established’ ? I am interested in what nurses believe, and why they hold those beliefs.