Last reviewed 22 June 2022
The importance of having sensitive conversations to understand and record a person’s wishes about their realistic care and treatment choices in advance, and for there to be shared understanding with their families and clinical professionals in an emergency, has never been more obvious than during the pandemic. In this feature, Christine Grey looks at how national consistency is being brought to practice so that people and health and care staff are fully informed about, and share the same understanding and expectations of, advance care planning.
The above approach was recommended by the Care Quality Commission (CQC) in its 2021 Protect, Connect, Respect review, to avert the risk of inappropriate decision-making and unsafe care or treatment down the line. The recommendation followed observations of confusion surrounding advanced care planning (ACP) and its relation to Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions and emergency care and treatment plans (ECTP), which became apparent not least during the pressure to have arrangements in place in the middle of a national health crisis.
What are the inconsistencies surrounding ACP?
A number of studies have found common themes associated with the misinterpretation of standalone DNACPR decisions. A lack of clarity resulted in geographical inconsistencies in DNACPR decision-making and in recording decisions. In some cases, this resulted in poorer care for those with DNACPR decisions than for similar patients without, other treatments being withheld and misinterpretation of it to mean “do not provide any treatment” at all.
The CQC’s review also raised concerns that DNACPR decisions during the pandemic were being made without involving people at all and were being applied to groups rather than taking into account each person’s individual circumstances.
In order to address concerns identified around the use of standalone DNACPR decisions, ECTPs were created to contextualise DNACPRs within broader, personalised treatment recommendations for use in emergency situations when a person might not be able to communicate this for themselves.
Is there an agreed ECTP process in use?
So far, in around 70% of counties in England and some areas of Scotland, health and social care organisations are using a new, recognised ECTP, the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT), to support healthcare professionals and patients to have better conversations and well-informed decision-making in advance about realistic emergency care choices.
After a gradual process of implementation, ReSPECT is now available for adoption by health and social care communities across the UK. The provision of ReSPECT training and resources are arranged at a local level and each adopting locality will have a ReSPECT lead.
Why is ReSPECT a recognised process?
The ReSPECT form was developed by a working group that includes the Resuscitation Council UK (RCUK), British Medical Association (BMA) and Royal College of Nursing (RCN), and is a process which:
centres around having conversations between patient, family and clinician
involves recording a summary of decisions on a form
ensures the form belongs to, and travels with, the patient and has "cross-boundary recognition” across primary and secondary care.
The RCUK and the CQC stress that ReSPECT is not:
just a form completed in isolation
a standalone DNACPR form
an advance decision to refuse treatment (ADRT)
part of a blanket approach to resuscitation and emergency care decisions.
It is a process developed to integrate DNACPR decisions with discussions about wider goals of care and documenting recommendations in an emergency, and is intended to ensure respect for both patient preferences and clinical judgement, and aims to ensure that these conversations consistently remain at the heart of the process.
It is particularly relevant for people who have complex health or care needs, who are likely to be nearing the end of their lives, or who are at risk of sudden deterioration or cardiac arrest. It can be used with residents in residential and nursing care homes as long as this takes place on an individual basis; if a person lacks mental capacity, the discussion should take place with those who know the person best.
The difference between DNACPRs, ACPs, ADRTs, and ReSPECT
The DNACPR status of a person is only one aspect of the overall plan of emergency care and treatment, whereas ReSPECT promotes good communication in ACP, shared decision-making and clear documentation.
An advance care plan is normally longer and more detailed than ReSPECT and is not restricted to planning for an emergency, whereas a ReSPECT form is a specific type of ACP that summarises the emergency care aspect of a wider ACP process. ReSPECT forms are designed to be rapidly accessible to professionals who need to make immediate decisions about care and treatment in a crisis.
An advance decision to refuse treatment is a legal document that people in England and Wales can complete to refuse treatment that they don’t want to receive and takes precedence over decisions made by others in the patient’s best interest. It is legally binding as long as it complies with the Mental Capacity Act, is valid and applies to the situation.
A ReSPECT form can be used to draw attention to the existence of an ADRT and should contain relevant information within the summary recommendations. The presence of a ReSPECT or DNACPR form should always be clearly highlighted in the patient’s clinical record for all who access it.
Coalition agreement on universal approach to ACP
The RCUK introduced Version 3 of the ReSPECT form in September 2020. It addresses areas where misunderstandings have been reported in the past, includes more personable and clearer language, contains an even more patient-centred focus than previous versions and has more prompts for explicit clinical reasoning.
Unsurprisingly, the most recent joint guidelines on Decisions Relating to CPR, issued in 2021, continue to highlight the importance of integrating decisions about CPR in overarching advance ECTPs, as is the case in the ReSPECT process.
Furthermore, in March this year, a set of Universal Principles for ACP were jointly published by a coalition of 28 partner organisations in response to the CQC’s review. The six universal principles enable all people, and health and care professionals involved in their care, to share the same understanding and expectations of ACP. The principles are as follows.
The person is central to developing and agreeing their advance care plan, including deciding who else should be involved in the process.
The person has personalised conversations about their future care focused on what matters to them and their needs.
The person agrees the outcomes of their advance care planning conversation through a shared decision-making process in partnership with relevant professionals.
The person has a shareable advance care plan which records what matters to them and their preferences and decisions about future care and treatment.
The person has the opportunity, and is encouraged, to review and revise their advance care plan.
Anyone involved in advance care planning is able to speak up if they feel that these universal principles are not being followed.
Universal Principles for Advance Care Planning, NHS England
Decisions Relating to Cardiopulmonary Resuscitation, the BMA, RCUK and the RCN