All rapid responses
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
Mr Stone states that the in-depth understanding of a family carer cannot be transferred to a suddenly-involved 999 paramedic by means of any written information. We agree with him, but his implication that the ReSPECT process may attempt to do this is incorrect. What the ReSPECT process aims to do is promote and support more advance planning by people and their health professionals, to guide immediate clinical decision-making in a future emergency. The process starts with a conversation that aims to achieve a shared understanding of the person’s situation, including their current health, of their goals of care and of their wishes and preferences for aspects of care and treatments that may be considered for them in a future emergency in which they are unable to make or express decisions at the time. The ReSPECT form summarises the resulting recommendations for those aspects of emergency care and treatment that would be wanted as well as those aspects that would not be wanted or that would not work for the person in their specific situation. The ReSPECT form is not a substitute for discussion with family or other carers who may be present at the time of an emergency. However, it can provide support for those family members or other carers at a stressful time by giving professionals responding to the emergency (in some instances paramedics) a clear, succinct summary of recommendations that have been discussed and agreed in advance with the person themselves and/or with people concerned about their welfare.
Furthermore, a ReSPECT form is not a substitute for an Advance Decision to Refuse Treatment (ADRT), but is complementary to an ADRT. A ReSPECT conversation (or any other advance care planning discussion) provides an important opportunity to offer people (in England and Wales) the chance to make an ADRT or (in England, Wales or Scotland) to give someone power of attorney for their future welfare, should they lose capacity. It is because a ReSPECT form contains a summary of recommendations for clinical care – and is neither an ADRT nor a ‘consent form’ – that it does not require signature by the person themselves or, if they already lack capacity when it is completed, by their representatives.
Mr Stone asks what specific wording is required on an ADRT to ensure that a person’s wish not to receive CPR in the event of cardiorespiratory arrest will be respected by paramedics responding to a 999 call. In addition to wording required by the Mental Capacity Act 2005 (MCA) section 25, subsection (5), the wording of an ADRT should reflect the specific individual wishes of the person. There is provision in the MCA (section 25, subsection (4) (c)) for an ADRT to be considered ‘not applicable’ if there are reasonable grounds for believing that circumstances exist which the person did not anticipate at the time of the advance decision and which would have affected his decision had he anticipated them. Some people may wish to refuse CPR regardless of the circumstances of a cardiorespiratory arrest, whereas others may wish to specify that their refusal would not apply if they – for example – stopped breathing as a result of choking. This emphasises the fundamental importance of dialogue between a person and their health professionals in developing any type of advance care plan, including an ADRT. 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.
Mr Stone observes correctly that some people who wish to refuse CPR may wish also to record a wish to receive other types of appropriate treatment in an emergency other than cardiorespiratory arrest. What is needed is a recognisable and immediately accessible way of documenting such preferences and advance decisions. An ADRT makes no provision for this and focuses only on refusal of treatment. Furthermore, an ADRT is available currently only in England and Wales. Where it has been implemented across a health and care community the ReSPECT process provides a clear way of discussing, agreeing and recording – in a recognisable and immediately accessible format – recommendations about emergency care and treatment that should be considered, as well as treatments that are not wanted or will not work.
For many people the precise circumstances of a future emergency cannot be predicted with confidence. When a crisis occurs, no document – be it an ADRT, DNACPR form or ReSPECT form – will be of benefit to a person unless it is accessible immediately. For that reason, we advise people to keep such documents with them, in a place where they will be easy to find in a crisis. We encourage them to make family, friends and other carers aware of these documents and where to find them, so that they can be used – not instead of clinicians listening to family, friends and other carers – but to support those people in ensuring that emergency decision-making respects a person’s previously discussed and recorded preferences, including any legally binding refusal of specific treatment.
Competing interests: We are two of the authors of this paper.
Response to Alex Ruck Keene: there is no 'could be read' about it - I do not consider that ReSPECT is logically consistent with the MCA
In response to Alex Ruck Keene (this series of responses 15 March) I am no expert on Article 8 ECHR, and I agree that there is a lot of work to be done, but ReSPECT does not fit the logic of the MCA.
The MCA very clearly places [suitable empowered] welfare attorneys above anyone else, for the making of best-interests decisions. The very concept of 'a form which is intended to guide decision-making during 'clinical emergencies'' implies an acceptance that some form of decision-making is better than 'an appeal to the principle of necessity'. It follows, that if there is a welfare attorney whose authority extends over the treatment being considered, it should be the attorney [and not the senior clinician] who signs the ReSPECT form. I would also point out, that there is only a single space for the contact details of a single 'legal proxy' in the emergency contacts section of the form: there can be several at attorneys, and if appointed with Joint & Several powers, the decision of any one of those [if the others are out of contact] should control best-interests decision-making, so logically there should be space for all attorneys to be listed on the form [with individual contact details].
This ReSPECT form, not only implies (the detailed covering material will be more 'sophisticated' - but it will be the actual form which most clinicians interact with, and 'take legal understanding from') that medical ethics which flow across national boundaries 'somehow rank before national law', but it is under the control of the clinicians in terms of its being 'signed off'. In my opinion, the form needs to bear the signatures of the laymen who are involved, if it is to promote the necessary integration between clinicians and 'family carers'. If the laymen were also signing ReSPECT, it would in my opinion tend to be a more accurate record of discussions (see re 1).
I am not sure if Alex read my more recent response before he submitted his (both are 15 March), suggesting that ADRTs should be stapled to the front of the ReSPECT form (ref 2) - I'm wondering if he can see a legal misunderstanding in that suggestion ?
As I have pointed out, section 4(6) of the MCA is complex, and reading a document signed only by clinicians, is not in my opinion sufficient for a reader (an emergency clinician) to defensibly claim compliance with section 4(9). What might in my opinion be sufficient to defensibly guide (justify following the recommendation on the form) such a clinician, would be if the form included a section along the lines of:
'We the undersigned, have discussed the patient's best-interests, and we all consider that the recommendation(s) on this form are in the patient's best interests, We confirm that to the best of our knowledge, no person who could make an adequately-informed decision about the patient's best interests, disagrees with the recorded decision'.
Then, everyone closely involved - clinicians and family, friends - needs to sign the document.
But clinicians are starting from the 'wrong place' with best-interests decision making. As I have pointed out (ref 3) an individual should start with a bit of self-examination:
'An honest consideration of section 4 of the Act, first requires a person to answer the question 'Am I sufficiently well-informed to properly consider section 4, and thereby to defensibly claim compliance with section 4(9) ?''
That is a very different question, from 'am I the senior clinician present'.
Competing interests: No competing interests
The comment by Michael Stone (http://www.bmj.com/content/356/bmj.j876/rr) upon this article could be read as suggesting that the ReSPECT process does not comply with the provisions of the Mental Capacity Act 2005. Having been involved in providing informal legal input to the Working Group during the course of the development of the process and the form, and for reasons that I elaborate in more detail in a post upon my website, available at http://www.mentalcapacitylawandpolicy.org.uk/respect-a-new-approach-to-a..., I would suggest that the process complies with both the provisions of the MCA 2005 and also the requirements imposed by Article 8 ECHR.
I do not underestimate the extent of the changes that will be required to implement and embed the process, but it is in my view an important step towards refocusing discussions and care planning towards the perspective of the patient.
Competing interests: No competing interests
I suggest that Advance Decisions should be stapled to the front of ReSPECT forms: and if ReSPECT is ‘my form’, then why is there no provision for me to sign it ?
There is a ReSPECT leaflet ‘Information for patients, families of patients and members of the public’ (Version 1.0) (ref 1). We can read, on page 4 of the form and in two consecutive sections:
‘In England & Wales, if an adult wants to make a legally binding refusal of one or more types of treatment they should complete an Advance Decision to Refuse Treatment (ADRT). That would not replace the ReSPECT form, which records details of care and treatments for which you would want to be considered, as well as any treatments that you wish to refuse or that would not work for you. Details of a document such as an ADRT should be recorded on your ReSPECT form.
… it [the ReSPECT form] can be used in your home, in hospitals, hospices, care homes, nursing homes and during ambulance journeys. For that reason it is important that you keep it with you, and that it is readily available for people who may need to see and use it. It is best to take it with you if you go out, and to make sure that your family, friends or carers know about it, and know where to find it in an emergency.’
I have a suggestion, which anyone who wishes to create an ADRT might consider. Section 2 of the ReSPECT form has a box for ADRTs – its wording is ‘Details of other relevant planning documents and where to find them (e.g. Advance Decision to Refuse Treatment, Advance Care Plan)’. My suggestion is as follows:
1) write in section 2 ‘My Advance Decision refusing [specify treatment] is stapled to the front of this ReSPECT form;
2) staple your ADRT to the front of the ReSPECT form;
3) staple a note – a small note which does not obscure the ADRT (the ADRT should ideally be slightly smaller in area than the ReSPECT form, so that the ReSPECT form’s edges protrude) – on top of the ADRT/ReSPECT, and write on the note:
‘To clinicians: please be aware that my Advance Decision is legally binding and if valid and applicable must be followed – with respect to the treatment being refused in my Advance Decision (ADRT), the ADRT replaces the ReSPECT form (see section 5(4) of the MCA).’
Without returning to my objection, made clear in my recent rapid responses, that the people who need to read the ReSPECT form (‘emergency clinicians’) are not sufficiently well-informed to defensibly make best-interests decisions, it is clear that whatever the ReSPECT form is, in England it is a part of best-interests decision-making. At least the ReSPECT form, however flawed in terms of compliance with the MCA it might be, indicates by its very purpose of ‘trying to guide decision-making during a ‘clinical emergency’’, acceptance of the idea that best-interests decision-making should ideally be replacing ‘an appeal to necessity’ even during ‘emergencies’. Legally, an ADRT ranks above best-interests decision-making, and a valid and applicable ADRT replaces best-interests decision-making.
I am also pondering, why, if the ReSPECT form is ‘mine’ (the patient’s: I complete certain sections, and control the location of the form), is there no provision for me to sign the form myself ? In my opinion, ReSPECT should be signed by the significant involved people, a group which includes the patient [if capacitous], attorneys and deputies, and the laymen who were fundamentally-involved in best-interests decision-making [if the form is completed when the patient lacks capacity]. And if I created a written ADRT, I would provide sufficient space on it for witness signatures from the family carers, relatives and friends I had explained my ADRT to, and also signatures from the clinicians such as GPs, consultants and senior district nurses who are involved in my care. I would also list the people who I had explained the meaning of my ADRT to as a section of my ADRT.
I await with interest, answers from the people who developed ReSPECT, to the question I posed in reference 2:
‘ We laymen, urgently need to be told what EXACTLY we need to write on an Advance Decision, to indicate that our refusal is intended to be unrestricted’
As Caroline Mawer writes (ref 3):
‘ReSPECT is, as its name suggests, about emergencies(1). Maybe this is why primary care is mentioned so rarely(2) in this week’s valuable set of BMJ articles about resuscitation. With the strong push for home deaths(3), this feels like a significant gap.
One way forward, if we’re serious about discussion, is to foster listening to, as well as talking at patients and families.’
Caroline also writes under Competing Interests ‘I don't personally want CPR or any other arduous 'fixes', when I reach the natural end of my life. I've got two chronic diseases so that may come sooner for me than for you!’.
The eminent clinicians who developed ReSPECT, need to concentrate rather more on making sure that Emergency Clinicians follow (respect) decisions already made and expressed by the patient, and a lot less on encouraging Emergency Clinicians to make decisions during ‘emergencies’. As Caroline Mawer points out, best-interests decision-making is a rather horrendous situation to be in: ‘Debbie eloquently described her worry about “what the doctors will think of you — will they think you don't care? Will they try to persuade you to change your mind when it's already the most difficult decision you've ever had to make?”’.
Competing interests: No competing interests
An open e-mail to David Pitcher, Juliet Spiller and doctors who are BMJ readers: how exactly can a person such as Beverly Tempest, involve 999 paramedics and also successfully forbid CPR for a ‘sudden’ arrest which occurs at home ?
Dear Drs Pitcher and Spiller,
Immediately after sending this e-mail to you I will be submitting its text as a rapid response, under the title ‘An open e-mail to David Pitcher, Juliet Spiller and doctors who are BMJ readers: how exactly can a person such as Beverly Tempest, involve 999 paramedics and also successfully forbid CPR for a ‘sudden’ arrest which occurs at home ?’, to your article describing ReSPECT at:
I discovered your paper after Zoë Fritz appeared on BBC Radio 4's 'Today' on Friday 10 March, promoting ReSPECT. I have some serious issues with ResPECT, which I have outlined in a response (10 March – and I apologise for incorrectly stating that welfare attorneys are given powers by a court: welfare attorneys are given legal authority by the OPG as enabled by the LPA – but, my comment about section 6(7) is of course correct) to your paper. I had previously responded to the recent paper by Fritz et al with my piece 'Unfortunately ReSPECT neither promotes the necessary change in culture, nor is it respectful of patients and family carers':
On Saturday 11 March, 'Today' featured Beverly Tempest, explaining why she has a DNACPR tattoo on her chest – see:
Your paper tells us '“Do not attempt CPR” (DNACPR) decisions were first documented in the 1970s, to try to protect people from receiving CPR that they did not want ...'.
Beverly Tempest, and Alan in my 'Alan and Liz' scenario, 'do not want' CPR. Their position is in essence simple to describe, and it is the following:
'The person is at home, has considered the possibility of a cardiopulmonary arrest (CPA) occurring despite such an arrest being very unlikely, and has decided that the certainty of no CPR and death, is preferable to the possibility of CPR and subsequent life with brain damage due to anoxia. This refusal is only of CPR: if the person has collapsed, is not in arrest, and would live on with clinical damage which prompt medical intervention might reduce (for example, the collapse might be to unconsciousness, not CPA, and caused by a stroke which would not necessarily be quickly fatal – treatment for such a stroke, would be wanted by the patient) then such treatment would be wanted. So we might imagine that a person living alone feels very poorly, calls 999 and is in CPA when the paramedics arrive, or that a person living with our patient sees the collapse/arrest and calls 999.'
How does this person, involve the 999 Services and also ensure that if the person is in cardiopulmonary arrest when 999 arrives, that the paramedics do not attempt CPR ?
If the suggestion is to use a written Advance Decision, then what form of wording would be successful (give actual ‘specimen’ wording, please – not a vague reference to 'the rules for ADRTs': we laymen can read 'the rules for ADRTs' in sections 24-26 of the MCA, and construct appropriate wording – what we cannot be at all sure of, is how 999 paramedics react to the wording on our ADRT, and that is what we need to understand when we create our Advance Decision) ?
I tend to think in terms of patient self-determination (Informed Consent/Considered Refusal), law and perspective-balanced behaviour. I have noticed that clinicians seem to think in terms of 'shared decision making' (I have always considered that term to be 'hopelessly ill-defined', and Realising Realistic Medicine tells readers 'While there is currently no agreed definition of shared decision-making in healthcare ...’), duty of care, safeguarding and medical ethics. But 'Considered Refusal', which is what Beverly Tempest and Alan are trying to achieve, has been described recently by judges. For example:
'C has capacity to decide whether or not to accept treatment [so] C is entitled to make her own decision on that question based on the things that are important to her, in keeping with her own personality and system of values and without conforming to society's expectation of what constitutes the 'normal' decision in this situation (if such a thing exists). As a capacitous individual C is, in respect of her own body and mind, sovereign.' (Mr Justice MacDonald)
If this e-mail is published as a response to your paper, then if you respond to me, please do so by means of one or more rapid responses to your paper, in the hope that some discussion of these issues can be achieved,
Best wishes, Mike Stone
PS Juliet Spiller ended an e-mail to me on February 10 with '... but I would ask that you wait for the launch and I know you will carefully look at all the documents, guidance and resources. Feedback will be possible via the website at that point'. If this appears as a BMJ response, please view it as feedback – I believe that 'feedback' is less useful than discussion, and I hope that posting this on theBMJ might achieve the more useful discussion.
Competing interests: No competing interests
We read with interest the Practice Pointer on Emergency care and resuscitation plans , and support much of the ReSPECT process. Discussions about resuscitation need to be had earlier in the patient journey, and as for all medical interventions, need to be tailored to the patient’s needs.
We agree that it is more appropriate and indeed easier for this to take place in the context of an emergency care plan, detailing how the patient may deteriorate and emphasising what to do, what may work or prove helpful, rather than having these discussions in the context of a ‘death planning’ document such as an Advance Care Plan. An emergency care plan has the legal status of any medical care plan, and is the responsibility of the consultant. Some Advanced Care Plans include the patients and their families’ wishes and choices for care around the time of death, which like an Advance Care Directive has a different function and different legal status. We agree that they should be kept as separate documents.
We have had a system in Nottingham for over ten years  for children with life limiting and life threatening conditions to have a Personal Resuscitation Plan as part of a family-held Emergency Care Plan , which is often best discussed and implemented long before end-of life planning.
Feedback from emergency staff has been very positive and the system is now used by children’s teams throughout the East Midlands and is recognised by the East Midlands Ambulance Service, as the standard children’s resuscitation documentation in the region.
Feedback from parents and carers is very positive. The conversations are difficult but families are glad to have a plan, and would recommend it to other families . Our case note audit showed improved documentation of resuscitation plans for children who had died an expected death .
We very much agree with the move away from an all or nothing approach to resuscitation for children, but wonder why this is not considered appropriate for adults?
1. Pitcher D, Fritz Z, Wang M, Spiller JA. Emergency care and resuscitation plans. British Medical Journal 2017; 356:408-410. (http://dx.doi.org/10.1136/bmj.j876).
2. Wolff A, Browne J, Whitehouse WP. Development of personal resuscitation plans instead of “do not resuscitate” orders for children with life-limiting conditions. Developmental Medicine & Child Neurology 2004: 46; Suppl 100; 45.
3. Wolff A, Browne J, Whitehouse WP. Personal resuscitation plans and end of life planning for children with disability and life-limiting / life-threatening conditions. Archives of Disease in Childhood Education & Practice Edition 2011: 96; 42-48. (doi:10.1136/adc.2010.185272).
4. Kightley M, Whitehouse W, Wolff T. Personal Resuscitation Plans for disabled children: an evaluation of parental views. Archives of Disease in Childhood 2010; 95: A19-A20. (doi:10.1136/adc.2010.186338.41).
5. Blundell PDM, Wolff T. End-of-Life Planning Documentation and Location of Death in Children with Life-Shortening and Life-Threatening Conditions. Clinical Audits 2015: http://www.clinicalaudits.com/index.php/ojca/article/viewArticle/443.
Competing interests: No competing interests
I apologise to David Pitcher for incorrectly calling him Pilcher in my previous response - this was a mistake, not deliberate.
Competing interests: No competing interests
You cannot impart the in-depth understanding of a family carer, to a 999 paramedic by means of either the ReSPECT form or by any other means: just one reason why ReSPECT is fundamentally flawed
Pilcher et al write in their paper:
'Exploring and achieving a shared understanding among patient, family, and healthcare team of realistic and individualised care preferences may sometimes be done badly or not even attempted'
And, under 'What you need to know':
'An emergency care plan provides recommendations for care and treatment for future scenarios when people might not have the capacity to communicate their preferences'
I am also told in Box 3 – and I see this as being an incorrect interpretation of section 4 of the Mental Capacity Act – that:
'The senior responsible clinician has ultimate responsibility to make decisions in the person’s best interests or for their overall benefit'
Beneath Box 3, we can read – and this is definitely not what the MCA's sections 6(6) and 6(7) clearly state:
'In the UK, the exception to this is if someone has been appointed as legal proxy with powers to make decisions about life sustaining treatment: that person’s decisions must be viewed as binding, as long as they clearly serve the patient's best interests'
The problem with the wording directly above, is that it is the role of a welfare attorney, as described in the MCA, to decide what is in the patient's best interests: while other adequately-informed persons (clinicians, relatives) might be able to competently form their own opinions about what is in the patient's best interests, the welfare attorney's authority was given by a court, and can only be challenged (see section 6(7) of the MCA) while an application for a court ruling is in progress.
The problem with the idea that 'The senior responsible clinician has ultimate responsibility to make decisions in the person’s best interests or for their overall benefit' is that the 'ultimate responsibility' imposed by the MCA if there is not a person empowered by section 6(6), is in fact a legal duty to satisfy section 4(9) of the Act: a duty which falls on everyone who is involved in an ongoing way with the patient, and who is faced with any decision to make. A legal duty which falls on family carers and relatives, as well as falling on doctors and nurses.
More fundamentally, this ReSPECT form is by its own admission about making decisions during 'emergencies' (something which is horrendously fraught and challenging): so it is not what we should be promoting (refs 1 and 2), and instead we should be promoting the making of Advance Decisions by patients. I also dislike contemporary 'DNACPR forms' but I want them to be replaced by Advance Decisions which refuse CPR. And if decisions are to be made during emergencies, we should be allowing the people best-equipped to make them to do so: as I have pointed out (refs 3 and 4), the qualification there is not 'who is the senior clinician' but rather 'have you yourself been talking to the patient about these issues ?'. That amounts to 'the people who were involved in the creation of the ReSPECT form – the GP, close family and /or close friends, family carers, hospital consultants – are the people who are equipped to make the most satisfactory best-interests decisions in an 'emergency' situation: it is not the people who would be reading ReSPECT, such as 999 paramedics or A&E doctors, who should be making best-interests decisions if any of the people who have 'done the talking with the patient' are present.
I agree that anything which removes the 'appeal to necessity' during 'an emergency' is a good thing (ref 5).
ReSPECT is – fundamentally – unsatisfactory because it fails to properly reflect the 'empowered patient' ethos of the MCA, and the more complex situation of fragmented decision-making which an understanding that section 4 of the MCA is describing a legal duty necessarily implies: the complexity being enormous, for end-of-life patients who are in their own homes. The point is, that to use the paper's own phrase, if 'a shared understanding among patient, family, and healthcare team of realistic and individualised care preferences' has been achieved it is those people – the ones in ongoing contact with the patient – who understand the situation: you cannot somehow transfer the in-depth understanding of a family carer to a suddenly-involved 999 paramedic, by means of a ReSPECT form [or, indeed, by means of any written information] – the understanding is too complex !
Competing interests: No competing interests