Advance care planning system helps ensure people’s end of life wishes are met

Patients' digitally recorded end of life care preferences help healthcare professionals access and share information  


Pateints' digitally recorded end of life care preferences help healthcare professionals access and share information    

Picture: iStock

A pilot project to support nursing home residents in planning and sharing their end of life care preferences digitally among health professionals will help to ensure people do not spend their last days or hours in hospital against their wishes, says Marie Curie nurse Wendy Hutchinson, who led the project.

The pilot was the first of its kind to use the London-based Coordinate My Care (CMC) NHS database for advanced end of life care planning in a residential care setting.

The first stage, which was run jointly by CMC, Wandsworth Clinical Commissioning Group (CCG), Sutton End of Life Care Team and the Health Innovation Network (the Academic Health Science Network for south London) took place last autumn. The nursing hours were funded by Marie Curie.

Over one month, Ms Hutchinson worked with the 35 residents at The Pines nursing home in Wandsworth, south west London, to discuss their wishes, preferences and plans for end of life care.

She was supported by a care home nurse and GP Faye Woolerton, who added the clinical information, including resuscitation decisions and medications, where appropriate.

Decision-making capacity

The information was entered into the CMC database so that, in the event of an urgent care situation or when residents are approaching the end of life, their wishes can be shared between designated health professionals, including NHS 111 and the London Ambulance Service.

Wendy Hutchinson

So far, the CMC service, which has been adopted by the capital’s 32 CCGs, has been used mainly for advance care planning for people with terminal illnesses, or for young people with chronic and disabling illnesses that are likely to deteriorate, Ms Hutchinson explains.

The residents in the pilot were not at the end of life, she adds, but the CMC service was adopted in a nursing home setting to help residents, many of whom have dementia, to make choices about their places of care and death while they have capacity.

‘It’s important to do this now, because there will come a time when people can’t express their needs,’ she says.

The residents were receptive to the opportunity of having their preferences recorded, says Ms Hutchinson.

‘There were no residents who didn’t want to take part. Often, they felt relieved at being able to have the conversation because it can be difficult for them to discuss with their next of kin,’ she says. ‘One woman told me her daughter couldn’t bear to talk about it.’

Advance care plan

The overriding preference expressed by the residents is that they are cared for in the nursing home at the end of life, rather than in hospital.

Although the system was not put into action during the pilot, Ms Hutchinson describes a recent incident in which devising an advance care plan had made a difference to enabling patients’ wishes.

A colleague on the Marie Curie rapid response team had attended a patient who was at the end of life and who had fallen in their home. Paramedics were called, but they were unaware that the patient had an advance care plan, which was not on the CMC database at the time, and wanted to take them into hospital because their oxygen levels were low.

Fortunately, in this instance the Marie Curie nurse was also on the scene and could show an advance care plan stating that the patient had expressed a wish not to go into hospital in this eventuality. ‘They were at the end of life and could stay at home. Imagine if the person was alone and couldn’t voice their opinion,’ Ms Hutchinson says.

By sharing the advance care plan on the CMC database, health professionals and nursing home staff can be reassured they are following people’s preferences in an urgent care situation, she says.

Stepladder of choices

Typically, in an incident, advance care plans would be flagged up during a call to NHS 111 or the London Ambulance Service. It would then be shared among paramedics using smartphone mobiles or tablets, or among anyone with password-controlled access visiting the care home, such as Marie Curie and district nurses, GPs, and social care staff.

The advance care plan follows a stepladder of choices. For example, a resident may state that, if a problem is treatable and reversible, they will go into hospital, but that, if their health is deteriorating, they would prefer not to.

‘The system is not set in stone. We are not denying people going into hospital if it’s really necessary,’ says Ms Hutchinson. Preferences are also reviewed on a six-monthly basis.

‘This means care home nurses have a clear idea of what the patient wants and they can continue the conversation in an easier way because their choices have already been established. This helps if there is a change in condition, and they need to make decisions with paramedics and others,’ she adds.

The pilot is in the process of being evaluated, and it is expected that the scheme will be implemented in other nursing homes in London.

The CMC database is currently only available in London, but it is hoped that in future it will be expanded to other regions.

Universal system

Using the CMC service in nursing homes has always been an aspiration, explains CMC clinical lead Julia Riley.

She says: ‘This is an extremely vulnerable cohort of patients, who would benefit immensely from advance care planning and are frequently admitted to hospital unnecessarily.’

There is a pressing need for a universal system for advance care planning because ‘these are not widespread nationally’, says Ms Hutchinson.

‘They tend to be rudimentary, preferences recorded on sheets of paper locked away in cupboards and lost when there are staff changes.

‘The CMC system for advance care planning is robust,’ she adds. ‘It also shows the patient’s medical history and contact details of relatives.

‘It is about health and care professionals working together to support patients’ needs so everyone is on the same page, and the patient is in control,’ she concludes.

About Coordinate My Care

Coordinate My Care is a pan-London NHS clinical service established in 2010 to address the need for integrated and coordinated care.

It was created by NHS doctors and nurses to empower patients by respecting their wishes and preferences, and help reduce unnecessary hospital admissions in urgent care situations.

It is available across London and funded by the city’s 32 clinical commissioning groups. It is hoped the service will be broadened out to other regions over the next few years.

Health and social care staff can create and edit the digital urgent care plans in all settings, including hospital, hospice, community and general practices.

CMC can be initiated by clinicians who know the patient and can be started by patients at home through the myCMC patient portal.

Only 19% patients with CMC plans spend their last days in hospital, compared with nearly 50% nationally. This enables a net saving of more than £2,100 per patient, according to CMC.


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