I thank David Pitcher and Juliet Spiller for their response: but the ReSPECT form will promote and strengthen the already prevalent misunderstanding and misapplication of 'English 'Consent' Law'
I thank David Pitcher and Juliet Spiller for their response (19 March: henceforth ‘the response’). This piece will be ‘terse in style’ because of the word-limit. I hope the BMJ allows me to use ‘spacing for clarity’ as submitted.
I write from the perspective of a family carer, supporting a terminal patient in the patient’s own home. And I am doubtless influenced by my own personal experience (1, 2).
Where I Agree with Pitcher and Spiller:
I completely agree that more discussion between patients, ‘families’ and clinicians is needed. So does Kate Masters (3).
I completely agree that an ADRT only covers refusals of treatment.
I completely agree that it is helpful to understand which interventions a patient would want, as well as to understand which interventions a patient would not want.
I completely agree with the final paragraph of the response except I have reservations about ‘in ensuring that emergency decision-making respects a person’s previously discussed and recorded preferences’.
Where I appear to disagree with ReSPECT, and ‘The Clinical Establishment’:
a) it is clear from section 4 of the ReSPECT form (‘Clinical recommendations for emergency care and treatment’), and also from other material on the RC(UK) and ReSPECT websites, and my e-mail communications with various clinicians, that there is a prevailing ‘medical opinion’ that ‘CPR is a clinical decision’. It is not: the method of performing CPR is ‘a clinical decision’, but whether CPR should be attempted is not a ‘clinical decision’. It might be a decision a clinician is forced to make – but it is either a normal ‘consent’ decision or else it is a best-interests decision, assuming there is any prospect of CPR restoring life. And best-interests decisions require an understanding of the factors in section 4(6) of the MCA, which are not things an emergency clinician can possibly possess an understanding of. So as Pitcher and Spiller agree on that point, logically they should agree with me (4, 5) that 999 paramedics should provide family carers with clinical information, and then defer to the family carers for best-interests decision-making. Please note: I am not saying the MCA requires such deference – I am saying, that it would follow from the logic of ‘we should be making the best decision’ if it is accepted that the family carer has a superior ‘holistic understanding of the situation’ (6).
b) guidance based on distinctions between who is, and who is not, ‘a clinician’ are contentious and unsatisfactory when family carers might be able to perform CPR as first-aid: and the distinction is dubious in even the simple situation of a family carer administering a tablet to a spouse suffering from dementia (7). Instead the guidance should demarcate between ‘the people who are in long-term close-contact with the patient’, and those people who are not: put simply, the people who have been able to talk to the patient as the patient’s illness develops, are the people ‘in the know’.
c) there seems to be an unwillingness to respect the decision-making authority of welfare attorneys (8).
d) this, from the response, completely misses the point: ‘Our recommendation is that a person making an ADRT should develop their individual document in discussion with a healthcare professional, to make sure that they use wording to record clearly and exactly what they want to refuse and in what circumstances.’ It is, as I have pointed out (9), the way that 999 paramedics interpret your ADRT [however you have worded it] which matters, and you cannot discuss the wording with a paramedic if there is a need for the ADRT to be considered.
e) planning ahead, in the sense of recording decisions which ‘should probably be followed during a future emergency’, is possible but challenging if the patient lacks capacity when the ReSPECT form is completed: but if the form is completed when the patient is capacitous, the patient’s ongoing autonomy takes precedence. If my terminally-ill father explains to me one evening ‘I’ve had enough of this – if my heart stops for any reason, just let me die, no CPR – we’ll sort this out when the GP visits tomorrow’ and my dad arrests before we have talked to the GP, his refusal of CPR should be respected, but it will not be ‘within the records’. And – this is really annoying, on sheer logical grounds - ‘no – his instruction is legally binding on the son, he doesn’t also need to create a written ADRT’ (10).
f) the MCA only gives decision-making authority to attorneys and court deputies: section 4(9) imposes a legal duty on everyone involved in ‘supporting’ the patient ‘in an ongoing way’ but that is everyone: family carers, GPs, consultants, etc. Presumably [on logical grounds] this legal duty cannot be imposed on ‘emergency clinicians’. It is possible to approach best-interests decision-making without assuming that there is a decision-maker who possesses the authority to impose a decision on others – that approach requires discussions between families, clinicians, friends, and provided everyone agrees about what would be best, there is a decision but no specific decision-maker. That approach - ‘focus on achieving the best decision’ - is the one I support. I have discussed the situation of disagreement (11, 12).
To Close: (hypothetical)
I have been sharing a home with my now ‘dying partner’ for 20 years, although my partner has only been ‘dying’ for about six months. I have talked to my partner a lot during this six months, and during those 20 years. The GP has talked to my partner a little, especially recently. We both talk to the district nurses who have visited a couple of times a week for the last 6 weeks – but they are often different nurses each visit.
My partner has just collapsed. I have called 999 to find out why my partner has collapsed. I am now standing over a 999 paramedic, who is doing something to my unconscious partner. Why on earth, should I accept that this paramedic decides what happens next ?
4 http://www.kingsfund.org.uk/blog/2016/07/end-life-care-getting-it-right#... (just tested – this link might not be working)
11 Within the PDF file which can be downloaded from
Competing interests: No competing interests