Must relatives be told that a patient will not be resuscitated for patients who are at home ?
29-Nov-2011 2:51 pm
I do not expect to get any views about this one, as usual, but I would like some.
If a patient is dying at home, and it has been decided by the clinicians that any future CPR attempt would definitely fail for pre-existing clinical reasons, is it necessary that any live-with relatives are informed of this DNACPR decision even if the patient her/himself is not told about it ?
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30-Nov-2011 7:40 pm
totally agree with the above comment, though would like to add as a community nurse that if live in relatives where not informed of the intention DNACPR, that the death of their love one would be an even more traumatic time i.e patients stops breathing they call 999, paramedics arrive and would have to explain if their relative is on the register that links with emergency services that DNACPR is not applicable, this situation would become distressing. employing ACP or indeed nursing assessment should allow for opportunity of discussion
1-Dec-2011 10:54 am
1-Dec-2011 8:43 am
Who 'makes' DNACPR decisions is a very complex issue, unless everyone is simply 'following the patient's previously expressed instruction'.
I am willing to discuss that one - and issues around the correct understanding of the MCA - but just for now, can I have some more answers to the specific question I asked above, please ? The question above, was intended to draw out opinions for 'logical necessity and consideration towards relatives, versus 'patient confidentiality'' - those issues get tricky for EoLC at home, and I'm after some material use in further discussions.
Possibly 'cutting my own throat here' ! - but one of the wider issues, is that many clinicians believe that 'A written Advance Decision refusing CPR is legally binding, but a verbal refusal is not' - discuss !
1-Dec-2011 11:35 am
I was always under the impression that consent for intervention of any description could not be obtained from next of kin or family unless an enduring power of attorney or guardianship order was in place. Patients permission has to be sought anyway for involvement of friends and family in such discussions
1-Dec-2011 2:41 pm
1-Dec-2011 11:35 am
How do you ask a patient, for permission to tell a relative, something you do not intend to tell (or discuss with) the patient ?
see 30-Nov-2011 7:40 pm who has pointed out, in my opinion correctly:
'if live in relatives where not informed of the intention DNACPR, that the death of their love one would be an even more traumatic time i.e patients stops breathing they call 999, paramedics arrive and would have to explain if their relative is on the register that links with emergency services that DNACPR is not applicable, this situation would become distressing.'
To put that another way - the way I have recently put it -
Now, logically for a RIP (that is short for a 'resuscitation is pointless' decision, ie a 'clinical' DNACPR), you should not be sending a 999 ambulance which cannot be doing anything very useful , beyond confirming CPA, if that RIP = no CPR attempt is right. Because that same team, might be needed at a car crash, etc. And surely relatives are clever enough, to understand that you can’t tell them to phone the GP, as opposed to 999, in an emergency.
And – my own suspicion, as I have not been in the situation – if I called 999, and the paramedics either didn’t turn up, or arrived and did not attempt CPR, and admitted that was something which had been decided a while ago, I would be angry: I would want to know, if an arrest was ‘to be the end of things’, ‘why the hell wasn’t I told ?!’. This would probably lead to a heated argument with whoever attended the death - also, and this has been commented on, as DNAR paperwork stays with the patient under most current guidance, it can be found by patients and relatives if it is in their home: again, if that was an 'undisclosed' DNAR, it will probably cause an argument, at best.
Psychologically, reducing the ‘shock’ of a death, is good – doing the above (not telling the live-with relatives), is exactly the opposite.
1-Dec-2011 2:47 pm
'I was always under the impression that consent for intervention of any description could not be obtained from next of kin or family unless an enduring power of attorney or guardianship order was in place.'
DNACPR is a non-intervention, and in fact the question is who has 'authority' to forbid interventions - this gets quite tricky for CPR, because of section 4.5 of the MCA. See my earlier 'can we keep this 'narrow' for now, request.
The point, here, is whatever you believe about informed consent, the MCA or patient confidentiality, how do you JUSTIFY not telling live-with relatives, if (and this is also quite tricky, legally and ethically) it has been decided to not tell an 'unrecoverable' patient of a 'clinical' DNACPR decision ?
4-Dec-2011 12:54 pm
A Consultant in Palliative Medicine gave this answer, when we discussed the question by e-mail:
'This is comlex.
You do not need to tell patient - if DNAR is on futility grounds
Family need to know - "Informed" not permission. If pt is at home then they must know as it is they who will show DNAR to people.'
And a lay friend of mine, gave this answer:
'As a close relative actively involved with the patient (particularly if living with the patient) then the relative should be informed of the situation.'
7-Dec-2011 1:15 pm
The Liverpool Care Pathway gives excellent guidance on this issue.
8-Dec-2011 2:50 pm
Thank you Selina, so what does the LCP say: if you have not discussed your clinical DNACPR decision with a patient, on 'possible distress' grounds, does the LCP state that live-with relatives must be told about the DNACPR decision ?
8-Dec-2011 3:17 pm
The joy of the LCP is that it allows for individualised care while at the same time reminding the nurse by its format of goals and variance recording that these are areas that should be approached - not least because, as you point out, it avoids distressing 999 panic calls.
9-Dec-2011 2:45 pm
8-Dec-2011 3:17 pm
But my point, is not 'individualised' - the problem I am raising, is one of a general conflict between the need to disclose to protect the relatives and to 'fit overall logical requirements' and the normal assumption of patient confidentiality.
So what you describe as 'the joy of the LCP' I would describe as 'a gap in the LCP' if it fails to properly cover this area !
There is also this complication. The patient, even if irrecoverable, is at the time of that DNACPR decision (ie between the decision and a future CPA) still mentally capable. The GMC issued some new EoLC guidance last year (Treatment and care towards the end of life: good practice in decision making), and while a patient is mentally capable, it covers what doctors are to do for 'treatment requests' in its section 14(d):
'If the patient asks for a treatment that the doctor considers would not be clinically appropriate for them, the doctor should discuss the issues with the patient and explore the reasons for their request. If, after discussion, the doctor still considers that the treatment would not be
clinically appropriate to the patient, they do not have to provide the treatment. They should explain their reasons to the patient and explain any other options that are available, including the option to seek a second opinion or access legal representation.'
How does a patient, who unless he has been told otherwise would probably assume that CPR would be attempted, exercise his 'option to seek a second opinion', if he has not been told of the DNACPR decision ?
14-Dec-2011 10:52 am
Surely if the patient still has mental capacity, it is a breach of their confidentiality to disclose medical information to their relatives without their consent? Why would you NOT discuss this with the patient?
I would feel very uncomfortable about participating in a DNAR decision on a patient who had mental capacity but was not informed. They must surely be given the opportunity to seek a second opinion if they don't agree.
In patients without mental capacity then it is clearly a different issue and I would consider it an important part of patient care to keep the relatives fully informed about all the decisions relating to their relatives' care. But if the patient can be involved in the discussion, I think it is a breach of their human rights to deny them that, compounded by a breach of their confidentiality to then discuss it with third parties without their consent.
14-Dec-2011 11:13 am
14-Dec-2011 10:52 am
Thank you Catherine, I am almost with you, except for the technical aspects of 'who makes decisions, and how they are made' once patients are mentally incapable.
But some doctors, and some guidance, believe that if it has been decided that any future CPR attempts would definitely fail for a clinical reason, it is legitimate to not inform the patient of the DNACPR decision 'if it would cause unnecessary distress' (or similar phrasing). That is true, for the 'it may cause distress' part - but whether the patient should still be told, and whether live-with relatives need to be told even if the patient is not told, are 2 different questions.
I am giving various people, in various clinical bodies, a fairly serious 'ear bashing' over the unclear, and apparently unreasonable when viewed by a relative, existing clinical guidance in this area (CPR decision-making in general). For example, the following is from the current version of the Joint CPR Guidance:
6.1 Communicating DNAR decisions to patients
When a clinical decision is made that CPR should not be attempted, because it will not be successful,
and the patient has not expressed a wish to discuss CPR, it is not necessary or appropriate to initiate
discussion with the patient to explore their wishes regarding CPR.
Careful consideration should be given as to whether or not to inform the patient of the decision.
Although patients should be helped to understand the severity of their condition, whether they
should be informed explicitly of a clinical decision not to attempt CPR will depend on the individual
circumstances. In most cases a patient should be informed, but for some patients, for example those
who know that they are approaching the end of their life, information about interventions that would
not be clinically successful will be unnecessarily burdensome and of little or no value.