Answers to this would help me
I am interested in the answers of operational clinicians to certain very specific scenarios - by using written scenarios, in which whatever is described 'has happened', the variability of the real world can be removed. In effect, this allows one to test for consistent behaviour across clinicians.
One such scenario, starts with a patient who has been identified as End-of-Life (ie he is expected to die within a year) who is living at home, with a single family carer, a son. The patient has not yet reached the stage when attempted cardiopulmonary resuscitation (CPR) would definitely fail in the opinion of his clinicians, and he has not refused CPR: so there cannot be an existing DNACPR Instruction in place, and his death would not be 'expected'. The patient is 'sort of aware' of treatment options and clinical prognoses.
One evening this patient, who is in some sort of distress or discomfort (pain, intermittent or continuous, struggling for breath, periodic hospitalisation, etc) initiates a conversation with the son with 'Son, I'm really struggling here - I honestly can't put up with this. Would it upset you, if I were just allowed to die, if I seem to be dying ?'. This conversation, which in my opinion would be stressful for both the father and the son, ends with 'We'll sort this out with the GP tomorrow - but if you think I have stopped breathing before then, let me die in peace without calling anyone'.
My two questions, are these.
Q1 What should the son do, if he thinks his father has stopped breathing, before anybody else has been told of the conversation ? By 'should' I mean 'from a legal, moral and ethical perspective'.
Q2 What 'would' real sons, be likely to do ? Here, I am asking 'what do you think real sons (or other relatives), in the real world and subject to stress, emotions, etc, would actually do, if they think their fathers have stopped breathing ?'.
Please do not tell me 'this is complicated' - I am fully aware of the complications, and I have read the guidance and law in this area: I am trying to find out, what operational clinicians believe the correct answers to Q1 and Q2 are.
Please assume, that the son would probably be right, if he believed his dad had stopped breathing (I acknowledge that is a complication, but it is not the one of interest to me here).
Most people would panic and call for help, the strongest would remember the words of the person they loved and say nothing. Its a hard cross to carry but sometimes laws have to be ignored to promote dignity. What would you prefer?? I know where I stand and I know many who have stood in those shoes...
Rochelle,
I agree that most people would call 999, and be 'very unsettled' when paramedics arrived.
My issue, which I am discussing with 'all and sundry', is that paramedics should be told to assume that relatives are honest, if there is no definite reason to believe the relative is not being honest.
In which case, the relative says 'My dad explained last night that he didn't want CPR any longer, last night - we were going to sort it out when his GP visited this afternoon, but he has stopped breathing - I called you, to be sure of what to do' AND THEN THE PARAMEDIC SAYS 'If your dad explained to you that he doesn't want CPR, we should let him die in peace'.
That is not what paramedics, are told to do - if it attaches, some answers are in the attached survey,
Mike
Associated files and links:
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All 8 survey returns collated Rules for Death.pdf
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As a person with Early onset Lewy Body Dementia, I have already done an advanced care package which covers end of life care, but we are not all the same and this all depends on what the person themselves want to happen.
As far as I am concerned I have made plans that, if I become too ill I do not wish to be kept alive, just to suite a clinician and end my days in a care home.
I want to live and die with dignity, and although many people object to this, it is my right to decide, and not a doctor or paramedic.
The documents we have, stipulate which treatments I will not accept and when completed will be signed by a GP and possibly a solicitor.
I think this subject is difficult to sort out, but like many of my friends who have this illness, we are sorting this out so that others are not left with difficult decisions.
While I accept that the main aim of paramedics and GPs is to preserve life, but at what expense when a person has dementia or some other neurological illness.
Ken Clasper
Thank you Ken, very expressive.
But I would advise you to make something called an Advance Decision to Refuse Treatment, also called an ADRT, if you wish to gain rather more control than an Advance Care Plan provides - be careful that your wishes are presented as orders, not just as 'wishes'.
Best wishes, Mike Stone