What should happen in this situation ?

6-Aug-2012 9:30 pm

I am making the assumption that there is no advance decision (living will) in place. If there had been then "Dad" would have been able to ensure his wishes known whilst he was still capable of making decisions for himself. He would also have had the opportunity to discuss with nursing/medical staff choices available to him and his family. This can be a chance to have those "difficult conversations" I mentioned in earlier posts.

1) What should the relative do ?
Unless at time they had the discussion with Dad they agreed together to discuss with the GP/Macmillan or District Nurse and write an advance decision the relative will have no evidence that a discussion about medical intervention in the case of a sudden deterioration so would have no choice but to call for urgent medical assistance or risk allegations of medical neglect. Although I doubt they would commence CPR I would expect the relative to call for an ambulance. When the paramedics arrived the relative would have the opportunity to make their Dad's wishes known but with no evidence that this was what he wanted.
In my experience if families are not well prepared to assist them to manage the emotions associated with a death at home in preferred place for care then they will call for assistance as their loved one deteriorates and this will result in a transfer to secondary care.
In this scenario it strikes me that the relative is very isolated as they have had a direct instruction from Dad not to call GP or District Nurse, the people who could have helped him to achieve his choices.

2a) The relative immediately called 999 and then told the attending paramedics of the instruction from dad

The paramedics would have only the relatives word that their Dad did not wish resuscitation and so they would have to proceed to intervene as Dad would not be able to speak for himself and would lack the capacity to give consent to plans for his care. Not to proceed to resuscitate or transfer to secondary care in this scenario would, I think be difficult for a paramedic, however sensitive they were to the situation. There would not be time for them to contact other health professionals for information/ reassurance that not to treat was correct unless there was an advance directive, or the care plans documented a Do Not Resuscitate.

2b) The relative waits until after dad is definitely dead, before he calls anyone

If this is not an expected death and the patient has not been seen by the GP ( I can't remember offhand how soon before death you need to have seen a GP to avoid a postmortem) then the professionals would have to involve coroner. There would be a post mortem as the cause of death would be unknown. A police investigation might arise from this but the coroner may decide the death is caused by pre existing co morbidity???

The relative would probably be aware it is against the law to assist someone to die, there have been some high profile cases in the press recently.

7-Aug-2012 7:04 pm

6-Aug-2012 9:36 pm

Life in the Fastlane.com

Thanks for the links, much appreciated.

I hope either a District Nurse or Macmillan Nurse responds to the question as I am sure they could add a different dimension to the discussion as well.
Thinking about it today, the expression of "let me die" uncovers a whole raft of issues for this family, not least the possibility of depression and therefore the right intervention could have a really positive impact upon the Dad, and the carer.

8-Aug-2012 5:27 pm

I've just realised i had an 'e-mail on a floppy' with me, that I sent to various bodies/people last week - I'll paste it here because the R4 programme si very well worth a listen, especially Deborah Bowman who explains the law pretty well:

http://www.bbc.co.uk/iplayer/console/b00t97xc

Hello All,

Another go at this ‘ADRTs are legally binding but verbal instructions are not’ thing, bringing in a heavy gun (a Professor of Medical Ethics and Law). Whatever the requirement that an ADRT refusing life-sustaining treatment must be in writing means, it does not mean that an ADRT refusing CPR is legally binding but an informed verbal refusal of an imminent arrest isn't legally binding (I admit, and this is very annoying, it looks at first sight as if it means that - sorry, but it cannot mean that !).

The link above is to an episode of BBC Radio 4’s Inside the Ethics Committee (from summer 2010), which discusses a constructed scenario using real ‘experts’, and during the discussion the panel of experts commented on that well-known case of the woman who ‘committed suicide in hospital’ (Waterton or some such name – I couldn’t quite catch it). It seems that woman had an ADRT, but Deborah Bowman pointed out what I keep telling people – listen from about 22-30 in (there is a progress bar you can drag) and you will hear Deborah say:

‘… although the Advance Decision is something of a red herring in that case, in that she presented at A&E and she had capacity, so just like you and I she was able to say ‘please don’t treat me’


If you think I’m quoting this ‘point’ out of context, listen to the programme, and in particular from about 20 minutes onwards. The programme was very interesting – and it seems clear that Deborah understood the law better than the ‘normal medic’ on the panel.

Deborah Bowman is an expert in Medical Ethics and Law – I’m reasonably confident the Deborah Bowman in question, is the one who recently became a professor:

http://sgul.academia.edu/deborahbowman

The legal principle is that you can refuse offered treatments, and if clinicians know you have (would have) refused, then they must not treat you – it is very simple, until you start to mess up the principle !,

Regards, Mike

PS I either wrote to, or e-mailed (can't remember which) Deborah after that broadcast went out, pointing out that she had said on R4 some things I had been saying, but which many clinicians appeared not to believe - her rather problematic answer, was more-or-less 'unfortunalely, you need a judicial review to actually prove they are wrong'. Or else, people could apply some 'O'-level logic to 'How can a better-informed decision-maker, not be making a better 'decision' ?' (as someoene else in that very good R4 programme pointed out, 'you can't discuss what the patient meant by an ADRT, if they can't tell you when you are reading it'.

9-Aug-2012 9:18 pm

Hi Mike, I have noted your responses but as I don't presume to call myself an expert I need a bit of time to do some reading around so will comment further shortly.

Just as a point of interest and purely based on personal experience I think you would always find that practitioners would practice defensively in this scenario. They would have had a broad overview of the Act in training ( if that) and I don't know anyone who would be keen to become a test case if they did not treat without written/ signed assurance.
I am not saying this is right, only that I think it is the reality.

13-Aug-2012 3:08 pm

Some links and references to relevant material.

Probably the most important bit of reading is the Mental Capacity Act itself (not the Code), in conjunction with some court cases from an earlier date (the court cases established that patients have the right to refuse offered treatments, and their MCA seems to attempt to extend this into incapacity).

Find the Act here:

http://www.legislation.gov.uk/ukpga/2005/9/contents

and a pdf to download here (this is a newer version than I had at home {downloaded 2009} – in the new version they have tidied up the type-setting of section 6(7) to resolve the issue I mention below):

http://www.legislation.gov.uk/ukpga/2005/9/pdfs/ukpga_20050009_en.pdf

Note that the two are not worded identically.

Of particular relevance are sections 1 to 6 (especially 1(2), 1(3), 1(4), 3(1), 3(4), 4 (6 – 9), 4(11), 5(2), 5(4), 6(6) {please note, in 6(7) the rider ‘while a decision as respects any relevant issue is sought from the court’ applies to both (a) and (b) – this is made clear in the notes to the Act, where the typesetting is better}), 20(5), 24 to 26 (especially 25(4) and 26(1)), 42 (especially 42(4)).


Good practice at end of life (GMC guidance):

http://www.gmc-uk.org/End_of_life.pdf_32486688.pdf

Of particular interest is section 14, describing the decision-making process for mentally-capable patients. It goes: doctors provide the clinical prognoses for offered treatments, then the patient considers these along with non-clinical factors, then the patient accepts or declines any offered treatment. The logical issue, here, is that a patient cannot by definition consider an offered treatment after he becomes mentally incapable – so, when he considers treatments which might be considered during future incapacity, he must perforce have used the same ‘reasoning process’. In other words, if you write an Advance Decision, for example, its instruction must still have been considered on the basis of clinical and non-clinical factors, whose relevance was solely determined by the patient.




Last Offices:

http://www.endoflifecareforadults.nhs.uk/assets/downloads/Care_After_Death___final_draft___20110610.pdf

I would direct you at sections 36 and 39 – section 39 includes these words:

‘Where the death is being referred to the coroner to investigate the cause of death, but where there are no suspicious circumstances,’ so it clearly does not automatically follow that any death which must be referred to a coroner is also suspicious.

NCEPOD Full version of the report 'Time to Intervene ?' You need the Full Report (not the Executive Summary) because the bit of most interest is the Foreword by Bertie Leigh, the NCEPOD chair, who is a lawyer.

http://www.ncepod.org.uk/2012cap.htm


The BMA/RCN/RC(UK) guidance for CPR (a BMA ethics expert, who will be involved at its end, told me over a year ago that this version was due for revision, but the revision had been held up – not sure how that is going) can be downloaded from:

https://www.resus.org.uk/pages/dnar.pdf

I would draw attention to the Main Messages section and this wording:

‘If a patient with capacity refuses CPR, or a patient lacking capacity has a valid and applicable advance decision refusing CPR, this should be respected.’

There is an ‘or’ in there – that does not state that you need to write an ADRT, if you can tell the clinician face-to-face (contrary to what a lot of clinicians currently believe). If you take the section starting with ‘or’ out, as you are allowed to do in English, then you are left with:

‘If a patient with capacity refuses CPR this should be respected.’

The next main message down is this:

‘A Do Not Attempt Resuscitation (DNAR) decision does not override clinical judgement in the unlikely event of a reversible cause of the patient’s respiratory or cardiac arrest that does not match the circumstances envisaged.’

It is important to understand what ‘envisaged’ means, there. If CPR could work, but the patient has refused, the relevant circumstances were for the patient to have defined inside his/her refusal. If the DNACPR is because CPR couldn’t work for a clinical reason, then if CPR might work, that represents a change from the (clinical) circumstances envisaged.

And although this logically should not be in section 6, it accepts that patients can refuse CPR for any circumstances the patient has considered:

‘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.’

The webpage the link below leads to, which is concerned with patient consent, is something I stumbled across looking for a different piece of consent guidance – it just goes to show, that if you look hard enough, you will find correct reflections of the law.

http://www.nhs.uk/Conditions/Consent-to-treatment/Pages/Problems.aspx

There are rules governing when life-prolonging treatment can be withheld or withdrawn when the patient's consent is not available.
The relatives and friends of the person receiving the treatment, along with the healthcare professionals responsible for the person’s care, should decide whether treatment should be continued. They should consider whether:
• the treatment is in the best interests of the person (in terms of quality of life and how long they will live)
• how much the treatment is improving their condition

It is important to note that there is a difference between withdrawing the patient's life support and taking a deliberate action to make them die, for example by injecting a lethal drug. The latter is illegal.
If activity in the brain has stopped, it is known as brain stem death. In this case, all treatments can be stopped.
Last reviewed: 11/06/2012 Next review due: 11/06/2014

I have been assembling my musings in a series of pdf documents, and I wrote in the most recent of the series this:

‘It makes no sense, unless there is a Welfare Attorney involved, to start by making claims about who is the decision-maker for events yet to happen: everybody should talk, and see if there is agreement about ‘what should happen if ...’: and that can only be a provisional best interests decision, which might be altered by the actual circumstances at the time the ‘if’ actually happens !’

Compare my wording, with the wording from that web page – neither says ‘who makes the decision’ (because the Mental Capacity Act is very complex, unless there is a suitably-empowered Welfare Attorney).


The inherent ‘fuzziness’ of the concept, and definition, of Expected Death, was clearly highlighted in a recent paper attempting to estimate the number of ‘unexpected’ deaths. The paper is ISBN: 978-0-9569225-6-4, Publication date: February 2011, Published by: National End of Life Care Intelligence Network. The authors were Blackmore, Pring and Verne.

In it, we can read this:

‘Using the data in Figure 1 it can be stated that 46% (229,883 /
500,100) of all registered deaths from 2009 were referred to the coroner. Using the definitions above, it could be suggested that this proportion of all registered deaths in 2009 were unexpected.
However, sometimes deaths are referred to the coroner simply because the doctor who knows and has seen the patient in the last 14 days prior to death is not available to sign the death certificate.
Analysing the data in Figure 1 further, it could be assumed, however, that referrals to the coronial service where no inquest and no post mortem were required were in fact not unexpected deaths because a death certificate could be issued following a discussion between the clinician and coroner only, in which case 22% (229,883-121,765/500,100) of all registered deaths in 2009 could be classified as unexpected.’

The current post-mortem protocols for home deaths rely heavily on a distinction between ‘expected’ and other deaths, but this is enormously unsatisfactory because it implies more connection between the death of a supposedly healthy 25 year old who ‘just drops dead’ and an end-of-life (‘last year’) patient who dies ‘a bit earlier than was ‘knowable’’ (i.e. who dies before ‘expected death’ {using ‘the GP will certify unseen’ definition for expected death – the only one making any sense, because that promise is why coroners will relax post-mortem protocols for expected deaths}), than between an expected death patient and an EoL patient who dies ‘in the situation that the GP probably would certify, but only after attending post-mortem (the problem arising when the GP cannot attend the death).