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I approve of the direction-of-travel of the approach in Wales, which it seems to me is more reflective and encompassing of the complexity of end-of-life than is the now widely-adopted ‘ReSPECT’ in England. The term Future Care Planning as used in Wales, explicitly includes planning made when a patient lacks capacity – for example, if the planning takes place when a patient is ‘comatose’ or ‘deeply unconscious’. Whereas the ReSPECT process, generates a main ReSPECT form (ref 1) which tells readers in its section 1 ‘The ReSPECT process starts with conversations between a person and a healthcare professional’. So, presumably any planning ahead which is only embarked on after a patient has already become unable to engage in conversation, should not be captured by either the ReSPECT process or by the ReSPECT form.
I believe that many NHS Trusts in England, in adopting ReSPECT have moved too far in the direction of trying to create a form which seeks to be ‘all things to all readers’ - whereas in Wales, as we can read in the paper by Taubert and Bounds ‘The approach seeks to cater for the disparate need of the Welsh population; there is not merely one format for multiple scenarios, but a choice of approaches, communication strategies and documents to suit bespoke needs.’.
I have only two issues with the paper. One is this sentence, which is in fact from the European Association for Palliative Care definition of ACP: ‘It encourages individuals to identify a person...
I have only two issues with the paper. One is this sentence, which is in fact from the European Association for Palliative Care definition of ACP: ‘It encourages individuals to identify a personal representative ...’. I consider it inappropriate, even if it is ‘convenient for ‘the NHS’’, to try and impose the identification of a single ‘representative’ (even setting aside that I’m not clear what ‘representative’ implies, especially in the context of decision-making) within the ranks of relatives and family-carers - ‘hierarchy’ is not an easy fit within many families. However, the paper does make it clear that in Wales the approach has gone beyond, or differs from in some ways, the EAPC definition of ACP – what I am unsure of, is whether Wales has avoided attempts to ‘identify or nominate’ a single person as what I will here describe as ‘a ‘senior or main’ contact or family-carer’ (unless, of course, the patient wishes to do that: my reservations are about situations when a person is being equally-supported by several different people, such as by three daughters).
My second issue, is with this sentence: ‘Some patients may wish to take control and fill in and cosign their own advance decision form, while others may prefer their clinician to help them set this up.’. I find the word ‘cosign’ misleading and inappropriate in the context of a written Advance Decision: an ADRT should be signed by the patient and witnessed by another person. That isn’t in my mind ‘cosigning’. Some patients might decide to create their own written Advance Decision(s), in line with the requirements of sections 24-26 of the Mental Capacity Act, and some patients might have their signature witnessed by someone other than a clinician – both are allowed by the MCA’s requirements for ADRTs. Asking a doctor, or nurse, to help you create a written ADRT, is of course an option and I believe clinicians should then help: but, that does not amount to the patient ‘not taking control’ of the ADRT – if the patient isn’t in control of his or her ADRT, I suspect the document would not ‘stand up’ legally.
I entirely agree with the authors when they state: ‘Advance and future care planning is a complex topic area for healthcare professionals, patients, carers and policymakers alike. It is not likely that a ‘one-size fits all’ approach will ever meet the different needs of the population, and so different forms and approaches are offered in Wales.’.
As it happens, I have recently published a piece (ref 2) which investigates the complexity of planning ahead, especially for end-of-life and in the context of the MCA : one of my ‘conclusions’ is that ACP or FCP can only be useful, and cannot be ‘a panacea’.
Mike Stone Twitter @MikeStone2_EoL
Ref 1 https://www.resus.org.uk/sites/default/files/2020-09/ReSPECT%20v3-1-form...
Ref 2 https://www.dignityincare.org.uk/Discuss-and-debate/download/449/