Help patients plan for a potential health crisis

The ReSPECT scheme uses advance discussions to make care choices for a future emergency

The ReSPECT scheme uses advance discussions to make care choices for a future emergency

Picture: iStock

Having potentially difficult conversations with patients about their preferences for treatment can be challenging at the best of times. It is even harder when they’re extremely unwell or having a health crisis.

A recently developed process aims to create recommendations for someone’s clinical care in a future emergency, based on their own wishes and preferences, gathered through advance discussions.

‘As clinicians, we tend to think patients don’t want to talk about these issues, but they do, and they find it really helpful,’ says Catherine Baldock, clinical lead for ReSPECT (recommended summary plans for emergency care and treatment) at the cardiopulmonary resuscitation charity Resuscitation Council.

Comfort and reassurance

In practice, the ReSPECT process involves developing a plan through conversations between a patient and one or more healthcare professionals involved in their care. Once created, the plan should stay with the patient and be available to professionals faced with making immediate decisions in an emergency, when the person has lost capacity to take part in decision-making.

ReSPECT can be used across a range of healthcare settings, including someone’s home, an ambulance, a care home, hospice or hospital.

Ms Baldock became involved in the process when she led its implementation across Coventry and Warwickshire in 2016, as head of resuscitation, clinical skills and simulation at University Hospitals Coventry and Warwickshire NHS Trust.

‘It’s been received positively,’ she says. ‘For patients who lack capacity and can’t communicate what they want, there is some comfort and reassurance in having a document that records their plan of treatment and care.’

‘It’s what healthcare should be all about, but it can be lost in the medical model of the world we live in’

Catherine Baldock, clinical lead for ReSPECT

Having a clear and concise plan in place puts patients firmly at the centre of decisions about their care, she says. It identifies what’s important to them and also helps to avoid future conflicts with family members who may be unsure about what their loved one wants.

‘It’s what healthcare should be all about, but it can be lost in the medical model of the world we live in,’ she says. ‘We lose sight of whether this is what the patient really wants.’

Among the tangible changes at her own trust was a significant rise in the number of patients opting for advance decisions on ‘do not attempt CPR’ or DNACPR, says Ms Baldock, a nurse who has specialised in resuscitation for more than two decades.

Before ReSPECT was implemented, about 100 out of a possible 1,200 patients had these in place, but that rose 50% in the following 12 months and had doubled after 18 months.

‘Not a replacement for DNACPR’

For Ms Baldock it is important to stress that ReSPECT is not just about deciding whether or not to have CPR, or solely targeted at patients nearing the end of life. ‘We’re trying to ensure that people divorce it from that. It’s a brand new process, not a replacement for DNACPR,’ she says.

‘It enables you to have discussions with all kinds of patients, including those with long-term conditions. And you’re talking about what they want as well as what they don’t want. What’s important for patients are issues such as whether they would wish to be moved to hospital if they became ill, and whether they would be happy in an intensive care environment. It’s easier to have these discussions than talk about resuscitation in isolation.’

Originally developed by a working group of more than 30 representatives from professional and public organisations, with support from the RCN, the process is appropriate for individuals of all ages and abilities, including children and young people.

But ReSPECT is especially relevant for those with particular health needs that may involve a sudden deterioration, those with a life-limiting condition including organ failure or advanced cancer or frailty, those at risk of sudden events such as a diabetic crisis or epilepsy, and those at foreseeable risk of death or sudden cardiorespiratory arrest.

How to have a ReSPECT conversation

As part of the process, healthcare professionals and patients should:

  • Discuss and reach a shared understanding of the person’s current state of health and how it may change in the foreseeable future
  • Identify the person’s preferences and goals for care in the event of a future emergency
  • Use this to record an agreed focus, which may be on providing life-sustaining treatments, or on prioritising comfort instead of efforts to sustain life
  • Make and record shared decisions about specific, realistic types of care and treatment the patient wants or doesn’t want considered
  • Explain sensitively any advance decisions about treatments that clearly would not work in this individual’s situation
  • Make and record a shared decision about whether or not CPR is recommended

While ReSPECT is not legally binding, the form should be used to guide immediate decision-making by professionals responding to someone in crisis. If health and social care professionals choose to override the recommendations, they should be prepared to give valid reasons for their actions.

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Organisations can register their interest by emailing info@respectprocess.org.uk


Allows time to think clearly

The key to success is being able to have these discussions well in advance of a crisis. ‘You could argue that this should be used in primary care and outpatients, because the last thing you want is to be completing this in the middle of the night when someone is being admitted to the emergency department,’ says Ms Baldock. ‘But we’re forced to do that if people haven’t had these conversations early on.’

Her words are echoed by one of the patient representatives involved in the working group, who says: ‘Let’s face it, no one really wants to think about what might happen if they were to become critically ill. But of course the best way to do that is planning ahead and doing the thinking while there’s no crisis to deal with.

‘That way you have time to think clearly, take advice and share your thoughts and wishes with the people who might have to care for you. The ReSPECT process provides this opportunity in a clear, straightforward way.’

There are huge benefits for nursing staff too, Ms Baldock says, particularly for first responders and more junior staff members. ‘If a patient deteriorates in the middle of the night they have a plan. They can look at the documentation and see the parameters they are working within, with the outcomes that the patient wants.’

Collaboration for better transfers

It is also useful for those working in nursing homes. ‘A lot of times patients don’t want to go to hospital or they only want to go in specific circumstances,’ she says. ‘Otherwise they want to stay in the care home, because they’re familiar with the environment and know the staff.’

ReSPECT is being evaluated by the National Institute for Health Research (NIHR), which is primarily looking at its use in a handful of acute trusts. Since it began, with just one trust in 2016, the number of organisations adopting ReSPECT has almost doubled year on year, with 15 acute trusts, clinical commissioning groups and ambulance trusts in 2017, 30 in 2018 and almost 50 planned for this year.

‘We want people to adopt it properly and use it for the purpose it’s intended,’ says Ms Baldock. ‘And we want collaboration between primary and secondary care and the ambulance trust so it’s adopted throughout a whole region, rather than just a single organisation.

A patient can transfer anywhere, so if you’re using it in your care home, but the person moves to a place where they know nothing about it, there is a risk that all that communication will be disregarded.’

‘When and how you have these conversations matters’

The RCN’s Amanda Cheesley.
Picture: David Gee

While the RCN is supportive of the ReSPECT process, the college says it is not without significant challenges. ‘Those who are already using it are finding it useful,’ says RCN professional lead for long-term conditions and end of life care Amanda Cheesley. ‘But that’s only if it’s used instead of other things and not in addition to them.’

Another major frustration is that it is only paper-based at present, although there are plans to make it electronic and available to all healthcare providers.

Some trusts have developed their own digitised versions, but they can only be seen within the group. ‘It makes it hard to share,’ says Ms Cheesley. ‘Some organisations won’t accept a photocopy because it doesn’t look like the original, which is on mauve paper.’

Make it meaningful 

But patients who have been involved in the pilot like the fact that it is not done in a hurry and that conversations can take place at different times, with time for reflection between them. ‘When and how you have these kinds of conversations is more important than anything else,’ says Ms Cheesley.

‘It’s vital that this doesn’t become another piece of paper that’s meaningless,’ she adds. ‘I don’t think that will happen, but it needs to be rolled out sensitively, with patients understanding what we’re trying to achieve. I think it will continue to have significant benefits, but you can never underestimate the amount of time it takes to bring in something new. It’s a work in progress.’

Lynne Pearce is a health journalist

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