'Lansley must listen to nurses on the front line' Musing Part 2: What would Grandfather need to write on his Advance Decision ?
Posted in: Older people's nursing | Specialist nursing areas
20-Jun-2011 2:39 pm
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This is the second in a series of ‘Musings’ which all address the same overall problem area, of behaviour for death at home.
What actual wording does Grandfather need to put on his Advance Decision, in order to be certain that any clinician who reads it, understands that he is refusing CPR irrespective of the cause of any CPA ?
This is essentially ‘How do you word an Advance Decision, which is intended to prevent attempted CPR for a ‘sudden’ death ?’.
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22-Jun-2011 5:09 pm
If a person has strong ideas about how they would want to be treated in specific situations, it’s best if they make their Advance Decision as clear and detailed as possible to reflect this. It is also very important that they ensure that all relevant medical professionals, and people close to them, are made aware of their wishes and have a copy of their Advance Decision on file. This is because the Mental Capacity Act Code of Practice states “Sometimes people who lack capacity to consent will require emergency medical treatment to save their lives or prevent them from serious harm. In these situations, what steps are “reasonable” will differ to those in non-urgent cases. In emergencies, it will almost always be in a person’s best interests to give urgent treatment without delay.” In some regions, ambulance services can record a person’s Advance Decision, including a refusal of CPR, for example the East Midlands Ambulance Service: http://www.emas.nhs.uk/contact/care-decisions/.
Compassion in Dying provides free Advance Decisions and toolkits for healthcare professionals to download from our website: www.compassionindying.org.uk. We can also provide information for people who are filling them in via our free Information Line – 0800 999 2434 (available 11am until 3pm, Monday to Friday).
23-Jun-2011 12:04 pm
22-Jun-2011 5:09 pm
Thank you.
I have just wasted about 30 minutes writing a reply while not logged in, and also having a second go which failed to post. I will write up a response at home (offline) and post it tomorrow.
But very quickly, the Code (and all other guidance) has no effect on the legal validity of Grandfather's ADRT: he need only comply with sections 24 to 26 of the MCA itself (quite short to read ,and clear in what it says).
23-Jun-2011 12:13 pm
22-Jun-2011 5:09 pm
I have just been checking that my 'Musings series' posted properly because I had problems posting 'Excerpts'.
Musings 6 and 7 are also relevant to your answer to me - what do you think the actual answers, for Grandfather, are to 6 and 7. In other words, when you consider your own guidance, and knowing what Grandfather wishes to achieve, how do you answer Musings 6 & 7 ?
23-Jun-2011 5:51 pm
2-Jun-2011 5:09 pm
Jo, thanks for your reply. I will deal with some of your responses, and I will split this into 2 separate posts. The question of what is, or isn’t, an emergency, and of ‘who is inside the Act’, will be in the next post.
I will begin with some background about me: I am pretty familiar with ‘your’ guidance, but I do not consider it to be appropriate, because it is very unreasonable if one is either a patient, or a relative. I have been ‘arguing the point’ with those people who publish the guidance, for a while.
You referred to the Code, but not to the Act. For my purposes – what is the law, here ? – these sections of the Code need reading:
‘The Act does not impose a legal duty on anyone to ‘comply’ with the Code
– it should be viewed as guidance rather than instruction. (page 1);
‘Certain categories of people are legally required to ‘have regard to’ relevant
guidance in the Code of Practice.’ (page 2);
‘However, the Act applies more generally to everyone who looks after, or cares for, someone who lacks capacity to make particular decisions for themselves. This includes family carers or other carers. Although these carers are not legally required to have regard to the Code of Practice,….’.
This stems directly from section 42 of the Act – most family carers, and all patients, are not subject to any further guidance, legally, beyond the Act itself.
Now, you can read either sections 24 to 26 of the Act, which define the only rules for an Advance Decision which the patient needs to legally follow, or you can also look at the Code. If you prefer the Code (which is less clear than the Act is) section 9.11 says that an Advance Decision must specify the treatment being refused (correct) and ‘may set out the circumstances when the refusal should apply – it is helpful to include as much detail as possible’ (incorrect). What the Act itself says, and this is an absolute pain to use for a clinical qualifying circumstance, is ‘in such circumstances as he may specify' and also that the Advance Decision is invalid ' if any circumstances specified in the advance decision are absent'. Note the MAY - for treatment the Act says MUST specify, for circumstances the Act says MAY specify.
That is ALL the Act says, about what must be mentioned on an Advance Decision - the treatment being refused must be clear, and there is the possibility of (optionally stated) 'qualifying circumstances'. Nowhere are the reasons for the refusal, mentioned as being part of an Advance Decision, and a patient need not disclose his reasons for refusing the specified treatment. Clinicians like to know them, but a patient need not give them, and their absence does not make an Advance Decision invalid. In fact, it appears that by not stating either qualifying circumstances, or ‘reasons’, there is no legitimate reason for a clinician to dispute an Advance Decision (it is possible that a relative might legitimately disregard the ADRT, because the relative might understand the patient’s ‘reasons’ because of his knowledge of the patient – clinicians do not possess such deep knowledge of ‘the patient’s personality, etc’).
You also mentioned 'best interests' which opens up a really lengthy debate, but for Advance Decisions all I will point out here is that if you are following an Advance Decision, you are not making an MCA best interests decision (Advance Decisions stand 'above' the best interests test).
23-Jun-2011 5:52 pm
2-Jun-2011 5:09 pm
Jo, this is the second part of my reply to your post. The dissemination of known information is indeed vital, almost all PCTs either have or are developing CPR/VoD policies, and the DH is about to begin making serious progress on its Locality Registers plan. My paramedic contact is also keen on the idea of a national DNACPR database.
But my problem, is for patients who are at home, what happens when the patient tells a family carer something, and then an event happens before this conversation has been disseminated ? In my father and son scenario, the son understands that his dad has refused CPR, because they have talked about it - nobody else has been told of the conversation when the father arrests, but the son does know. If the son is 'within' the act, then surely he must (legally speaking) prevent any CPR attempt, by not calling anyone - section 1(5) says that all 'decisions made' must be in the patient's best interests, and section 4(6) makes it pretty clear that best interests are known here. Or, to be more technical, that the son can legitimately claim the defence of his actions, offered by section 4(9) of the Act. The Joint CPR guidance also says that CPR should not be attempted if the patient has refused.
The Code attempts to somehow claim (or imply) that the son cannot make a best interests decision for CPR, which I do not accept as correct. And, the Code claims ' Where the decision involves the provision of medical treatment, the doctor or other member of healthcare staff responsible for carrying out the particular treatment or procedure is the decision-maker' but in my scenario, the decision for the son is whether to involve a clinician or not. And, we know that CPR is medical treatment, because it can be refused using an Advance Decision, and I myself was taught the basics of 'push and blow' CPR 35 years ago - so CPR can be provided by many 'amateurs'. And, as I have said, the Code does not apply to the son in any case, because of section 42 of the Act: and the Act itself, does not specify who can do what !
The question of whether a paramedic is 'inside the Act', and therefore has to make a best interests decision, or 'outside the Act' and can therefore reasonably default to the preservation of life (for Father and Son, not for ADRTs which are different), is an interesting one, as is the question of whether knowing that an Advance Decision or DNACPR Instrument/Decision exists, is sufficient to push paramedics 'inside' the Act. But I will not discuss them here.
I have just noticed ‘our website’ and I will check it out, and if it has a contact e-mail address, probably ask a few questions, which I consider to be ‘interesting and thought-provoking’, but which seem to create something I think is close to panic in many recipients (but not all – the usual rule, is the closer to an ethics committee the recipient, the more the person understands my issues and objections to existing protocols).
East Midlands seems to ring a bell. You don’t happen to know and agree with, a chap who from emory is called Ben Lobo, do you ? Because he and I do not agree, about the law in this area !
24-Jun-2011 2:48 pm
22-Jun-2011 5:09 pm
Jo, I have rapidly visited your website, downloaded some stuff to take home and look at (I e-mail from a library) and I have just very quickly scanned the sample Advance Decision form.
Your form is 'pretty standard', but the MCA does not say that an ADRT refuses a treatment in specified circumstances, as your form implies. The Act states that circumstances MAY be specified, and the ADRT is invalid if any specified circumstance is absent. this is very awkward to work with, but it si pretty clear - the qualifying circumstances are there to restirct the refusal, not to confirm the refusal. Not the same, at all. And, the Act does not state that a circumstance need be clinical in nature. A circumstance could be based around 'I am refusing attempted CPR, as soon as my new Will has been signed and witnessed' with 'the witnessing of the Will' as the qualifying circumstance.
I will send the detailed comments, to the website: basically, you cannot get to 'that belief set' directly from the Act, and only the Act applies to the patient who writes an Advance Decision.
25-Jun-2011 10:06 am
22-Jun-2011 5:09 pm
Jo, I have looked at the websites ADRT material, and sent some questions to it. Unless I mistook it, you called it 'our' website. So do you yourself, happen to know where this comes from, for an advance decision:
Your witnesses must be aged 18 or over and must not be:
• one of your relatives or your partner;
• anyone who may inherit your money or property after you die; or
• anyone you have set up as your health care proxy or attorney (or their partner).
Legally, where does that guidance come from - I have seen other similar guidance, but I cannot work out its origin: is it a piece of case law, that I have missed ?
19-Jul-2011 4:13 pm
Dear Michael,
I have attempted to briefly cover your points:
We designed our Advance Decision using the Mental Capacity Act itself and the Code of Practice. Compassion in Dying seeks to make its Advance Decision both accessible and legally binding.
In terms of the scenario you have outlined, advance decisions to refuse life-sustaining treatment should be written down and witnessed in order to be binding. But your slightly amended scenario - where the man has told his grandson he does not want CPR, and went into cardiac arrest before writing this into a valid advance decision, this puts both the grandson and paramedic (if called to the scene) in a very difficult position.
I don’t feel that I can answer your detailed questions on whether grandson and paramedic fall inside or outside the Act. We advise people to speak to loved ones and healthcare professionals about their Advance Decision, and to ensure it is recorded on their medical records to help avoid the kind of scenario you outline. Emergency situations are particularly difficult in relation to advance decisions, and this is why we are interested in schemes such as the East Midlands Ambulance Service’s project of recording DNACPRs etc. We also try to make people aware that they can appoint a trusted person to make health decisions on their behalf, using the Lasting Power of Attorney.
We have undertaken several rounds of legal, medical and patient feedback on the Advance Decision to try to make it as useful for patients as it can possibly be. The example circumstances we give when a patient may want to refuse treatment are clinical – based on requests we have received from people wanting information on the clinical circumstances where they may want to refuse treatment. We do also advise people that they can refuse all life sustaining treatment in all situations if they wish. Our statements on witnessing are based on legal advice we received when we first drafted a specifically MCA-compliant Advance Decision.
Thank you for your thought-provoking comments – we will certainly bear them in mind in future revisions of our materials and in our day-to-day conversations and correspondence with members of the public and healthcare professionals. We will reply to your more detailed comments on email.
Best wishes,
Davina Hehir
Director of Legal Strategy and Policy
21-Jul-2011 10:06 am
19-Jul-2011 4:13 pm
Thank you Davina - I read this only a few minutes ago, after the e-mail you sent to me: you have had some more 'thought-provoking' comments by e-mail, prior to this posting (it also clears up the reference to NT you made in an e-mail).
If you read the e-mails, you will understand that I agree with you about this comment you made:
'But your slightly amended scenario - where the man has told his grandson he does not want CPR, and went into cardiac arrest before writing this into a valid advance decision, this puts both the grandson and paramedic (if called to the scene) in a very difficult position.'
My objection, which the e-mails will have made clear to you, is why do clinicians, and bodies which publish, consistently ignore the fact that for patients who are at home, the patient and the relatives can talk to each other, and be aware of relevant things, BEFORE ANYBODY ELSE ? Why, if you are publishing on the subject, do you not ADDRESS THIS ISSUE ?
Your 'I don’t feel that I can answer your detailed questions on whether grandson and paramedic fall inside or outside the Act' is relevant, in as much as there is apparently no law in England, which requires a person to summon medical assistance for another person, unless the 'observer' actually caused the injury. The point is, a relative who thinks his dad has arrested, is either 'inside' the Act (so logically, the relative has to consider what would be in the patient's best interests, as defined by section 4) or 'outside of it' (when legally, if probably not morally, the relative is quite free to do nothing and just watch the patient die).
I am sorry, but the existing guidance and 'belief set' is simply wrong, and offensive to any relative who is honest, which must be the starting assumption.
I will continue to 'dish out some stick' until it is altered to something more reasonable and more perspective neutral !
