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