Thread by @ProfMarkTaubert

Today evidence being given about #DNACPR and #ReSPECT forms during pandemic at @covidinquiryuk

A thread on the situation in Wales. The Advance and Future Care Planning Strategic Group aims to provide strategic direction for all aspects of advance and future care planning in Wales and is chaired by myself... #Thread

The position in Wales: we have national DNACPR, ACP, ADRT and TEP forms. ReSPECT emphasises the concept of discussing CPR together with a number of other aspects of future patient decisions and pathways, rather than as a standalone form to consider CPR.

ReSPECT is therefore not a DNACPR form, and in fact many areas that use Respect also use separate local, regional or national DNACPR forms in addition. ReSPECT is an Advance Statement, or a short Advance Care Planning form.

Wales has had an All Wales DNACPR form& policy since 2015. This can move across all settings, is given to patients when they go home from hospital, for instance. Why do we have additional forms/formats in Wales? To give maximum flexibility to patients (who sit on our group).

The Welsh national ACP-A form is much like ReSPECT, but has a further 'Future Care Plan' record of best interests form,that covers people who cannot make capacitous decisions abt specific future treatments. Created with a full multiprofessional legal review prior to the pandemic.

Wales therefore did not have a void to fill, back when ReSPECT forms came in in some parts of England. ReSPECT was particularly well received in England in settings that had no DNACPR policy and no ACP documents in place, ie in places with a void.

There have been comments abt applicability of ReSPECT forms in terms of UK Mental Capacity Act. A form that covers so many potential future decisions also needs to measure a person’s ability to participate in discussing EACH individual one, for instance abt views on future CPR. We are talking here about people living with frailty and palliative illnesses,where capacity fluctuates

DNACPR forms, whilst often maligned, are a standalone format for CPR that can capture capacity assessment, in particular CPR decision-specific. It is not possible to say someone 'has mental capacity for all decisions' in one assessment, unless u measure capacity for each choice

One of my bugbears with our DNACPR forms are incomplete forms, but this is an issure with ALL FORMS, INCL Respect. Legal profession have commented on this&legal risks with the Mental Capacity Act regarding ReSPECT: mentalcapacitylawandpolicy.org.uk/guest-post-the…

ReSPECT urges education around ACP/FCP discussions. We endorse this& other areas/regions have embraced this and done this in parallel, so ReSPECT has good education formats.Other areas in England, Wales. NI &Scotland have already got pre-existing rolling programmes& modules

But ReSPECT may be at risk of being misunderstood. It is an Advance Statement of Preferences, not a DNACPR form. Frontline clinicians in Wales have found wide-spread misunderstanding from patients and staff across the border in England about what a Respect form is for.

In the above study, staff stated: ‘The ReSPECT form is when we say “Do Not Resuscitate”, you know? While the advance care plan is more to find out what
they like, in last days, do you want your family to sit with you all the time?’" [nursing home carer]journals.sagepub.com/doi/pdf/10.117…

or: ‘The ReSPECT form was written by daughter “not for hospital admission”. But patient’s condition was severe,so we called 999 & paramedics said “no it’s not for hospital admission” We contacted daughter.She said“if my mum is going to die due to this infection I am going to sue”

above may demonstrate a number of potential misunderstandings of ReSPECT process, that in past would have perhaps not happened with a 'simpler' DNACPR form (which ‘only’ covers CPR, so is simple and does what it states).

In essence, ANY form can lead to misunderstandings and be poorly filled in, or misinterpreted, so it needs to be clear on what it does for all involved, and trying to cover 7 different aspects of future care may be a challenge. CPR still may have to be a separate form due to MCA

A+E and Medical Admissions staff we have spoken to think the ReSPECT form does not always convey clearly what a patient wants, or would have wanted..
It makes "comfort care vs hospital interventions” (scale in section 3) too binary a choice.

If a confused cancer patient has a dislocated shoulder at home after a fall, but it states 'would only want comfort care' at home on ReSPECT form:Do you 'not admit' them, when maybe form envisaged an end of life care scenario, rather than a very reversible dislocated shoulder?

Whilst our Wales Strategic group applauds many of the positive aspects *(esp education) that ReSPECT puts forward, we have have not envisaged how it would directly improve things in an NHS Wales context that already has formats in place.

Whilst also acknowledging that all our policies mention ReSPECT (e.g. what to do when a form is presented, e.g. when a pt comes over from England) as part of their health record, and it usually prompts important conversations with patients and those close to them

ReSPECT works well in many parts of the UK, it should however not be seen as a magic wand for poor communication with regard to care and DNACPR, or a replacement for DNACPR. When we spoke to staff, DNACPRs were NEVER seen as a proxy for "Do Not Give Any Other Care"

This was one of the criticisms levelled in the past. Having worked in this area for many years and having held many such hard conversations (incl during Covid), we have said time & time again: the type of form matters least, the patient and the quality of the conversation is paramount

There were massive issues with DNACPR in pandemic. Stating that things will improve if ReSPECT is used across all four nations is in my mind (as a practising clinician) 'design by committee' rather than asking patients/carers and front-liners.

Rather, Improving education (in healthcare and amongst the public) about ordinary dying and palliative end of life care, and the terrible success rates of CPR in those settings, should be a primary focus.

Here are some links: wales.nhs.uk/DNACPR for our All Wales policy and Form, and wales.nhs.uk/AFCP for the other forms incl Future Care Plans