Gradual roll-out for electronic advance care directives

While the details of how and when advance care directives are added to the PCEHR are still being worked out, the Cradle Coast Connected Care (4C) project is rolling out its advance care planning system to a fifth residential aged care facility in Tasmania.

The 4C project was one of the Wave 2 sites for the implementation of the PCEHR, and has developed a clinical repository to securely store advance care plans for participants in four RACFs in northern Tasmania.

Since the completion of Wave 2 in June last year, the Tasmanian Health Organisation-North West has continued the project, which in addition to the clinical repository has developed a number of advance care planning tools that can be shared by nurses in the facilities, local hospitals and local general practitioners.

The system has been built by software developer Alcidion to align with the THO-North West's Living Well and Dying Well (LWDW) palliative and aged care project, which aims to improve the care of people at the end of their life.

Barbara Ringeisen Arnold, director of eHealth at THO-North West, said the system built as part of the Wave 2 project has been implemented at four RACFs and is now being rolled out to a fifth. It is understood that funding allocated to the project under the Tasmanian Health Assistance Package and the recent allocation of $10 million from the federal government to add advance care directives to the PCEHR will assist in rolling the 4C system out to RACFs throughout the state.

At the moment, the 4C clinical repository is a standalone system, Ms Ringeisen Arnold said, but it is hoped that it will link to the PCEHR in the near future.

“At the moment we are using the 4C clinical repository to which all of the care providers have access,” she said. “The idea is that the aged care facility nursing staff, all of the GPs and after-hours GPs, and also hospitals have access. They will all have of their own profiles so they can access it and have different views depending on their role.”

The system involves a number of planning tools, including advance care directives, which list the nominated custodian or enduring guardian; the Dignity Discussion, Preferences, Advanced Care Directives Summary and Goals of Care (DPAG), which records the person's values and beliefs and how they relate to elements of their illness and its expected trajectory; and Clinical Action Plans (CAPs), which are developed to manage care in preparation for expected deteriorations.

Alcidion has built a dashboard for the portal to the system which provides an overview of key patient information, enabling patient status to be clearly understood at a glance. Clinicians involved in the project have been provided with a log in, and some sections of the record are only able to be edited by certain clinicians, such as a GP changing a medication order.

When a new advance care plan is created in the RACF, the system will search for the resident's Individual Healthcare Identifier (IHI) through the HI Service, and then patient administration information can be added such as the room number in the facility and the contact details for the enduring guardian and the GP.

There is also a privacy page that allows the patient to specify whether their 4C record can be shared beyond the RACF, and the resident can opt to have a text message sent to their enduring guardian if someone outside of their care team accesses the record.

(More information on how the system works in practice is available here (PDF). This page is shortly to be transferred to the THO-North West website.)

Ms Ringeisen Arnold said much of the work over the last year has consisted of change management and training aged care staff to use the system.

“The [Wave 2] project was finished at the end of June last year and then we took what has been built to roll the system out to residential aged care facilities – a fifth one is coming on board very soon,” she said.

“We had to register all of the residents and we are now completing advance care directives on the system, and entering their trajectory and their advance care planning with regards to dignity, preferences and goals of care etc.

“That is happening but there is still work to do, as it is very much a change management process to make sure it is embedded in the aged care facility. It is a very long process.”

The 4C team has a system administrator who looks after the portal and clinical repository, as well as a nurse who looks after the Living Well and Dying Well aspects of the project. Staff turnover and the fact that aged care nurses are incredibly time-poor has been the major challenge, Ms Ringeisen Arnold said.

“You have to repeat a lot of training as there is quite a lot of staff turnover, so you have to begin again, but also the actual handing over of knowledge isn't really happening yet, so we are still relying on project staff to do that,” she said.

The system has been designed to both accept paper-based advance care directives that some residents already possess, which can be scanned in, as well as an electronic template that staff can fill out.

“A very important part is to designate the person responsible or an enduring guardian in the system,” she said. “They can obviously make further decisions when the person can't make decisions any more. Our goal is to capture the advance care directive very early, when the person can still make decisions, so hopefully they have already appointed the person responsible or an enduring guardian.”

The 4C repository is still a standalone system that is not yet integrated into aged care or general practice clinical software, as the timeframe for the development of standards did not fit in with the work the 4C project was already doing.

“We looked at integrating with aged care software like iCare or Autumncare and all of the GP software, but that wasn't in the scope of the project,” Ms Ringeisen Arnold said. “Also, we built a brand new system from scratch as there was nothing around like it, but having it integrated would obviously be a big bonus for clinicians as it reduces data entry.”

The plan is for the 4C system to integrate with the PCEHR, but the details and implementation plan are still being worked out, she said.

“The idea is that the 4C system will integrate with the PCEHR and [aged care and GP software] can upload a shared health summary or event summary up to the PCEHR, and this would be downloaded into the 4C system.”

For acute care, the plan is for the new emergency department administration system that Tasmania's Department of Health and Human Services has recently put out to tender for Tasmania's public hospitals to be compatible with the 4C system and the PCEHR, she said. Integration with the 4C system and PCEHR is a requirement of the tender.

When the new ED system is in place, which is expected to be by June 2014, it will be required to flag that a patient has an advance care directive in place.

Ms Ringeisen Arnold emphasised that rolling out the system to the rest of Tasmania and then the rest of the country would take time. She hoped that by potentially making advance care planning part of a facility's accreditation process, the concept could become more entrenched.

“It is a long process, and staff in aged care facilities are very time-poor and they have funding issues, and doing advance care plans is not part of their accreditation so it's not funded,” she said.

“We still have to negotiate the funding agreement and an implementation plan, but the broad idea is to roll it out statewide in Tasmania.”

While the details are worked out, people who have already registered for a PCEHR can add the name and contact details of their advance care directive custodian to their personal information, which is available to healthcare providers and can not be hidden from view.

NEHTA has been separately funded to develop a national specification for advance care planning and for vendor support to encourage upgrades of aged care and GP desktop software to create and receive advance care directives and upload them to the repository.

Pulse+IT asked to speak to a technical expert at NEHTA but was referred to the Department of Health and Ageing.

Posted in Aged Care

Comments   

# David Rosengren 2013-05-24 11:21
It is pleasing to note that this is a topic that is being actively discussed around the country. The most recent meeting of the Queensland Clinical Senate discussed this very issue - Mandatory Advanced Care Planning for Residential Aged Care. We are looking at how to drive reform to introduce ACPs as a requirement for entry to residential care and then also tackling the issue of how to standardise documentation and make it available. The PCEHR looks like the best option in the future. Lots of work to be done

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