Advance care planning and My Health Record

Ms Angela Parker:

Welcome everybody to today’s webinar on Advance care planning and My Health Record, delivered as part of the RACGP’s Practice Essentials Webinar Series.

My name is Angela and I am a Project Officer from the RACGP’s Practice Technology and Management team, and I will be your host for today.

I am joined by Dr David Adam, a GP based in WA who will be taking you through today’s presentation.

Dr David Adam is a general practitioner and hospice doctor in the eastern suburbs of Perth. He is a member of the Practice Technology and Management RACGP Expert Committee, and represented the RACGP in the Electronic Prescribing Technical Working Group established by the Australian Digital Health Agency and the Department of Health.

David, welcome to the webinar.

Dr David Adam:

Thank you, it’s great to be talking to you about such an important topic.

Ms Angel Parker:

Thanks, David, and thank you to everyone attending for taking time out of your busy schedules to view this session.

Before we begin, I would like to acknowledge the traditional owners of the lands from where each of us is joining this webinar, and I wish to pay my respects to Elders past, present and emerging.

This activity is delivered by the RACGP in partnership with the Australian Digital Health Agency.

I’d now like to hand over to David to begin the presentation.

Dr David Adam:

Thanks Angela.

As Angela said, this activity is delivered in partnership with the Australian Digital Health Agency. By the end of the session, everybody will be able to tell us which advance care planning documents can be uploaded to the My Health Record and explain how My Health Record can support advance care planning.

But beyond that, on today's agenda we're going to talk more generally about advance care planning and why it's important.

The role of the GP as a care facilitator in care planning, the ins and outs of what can be included in advanced care planning, how to manage and share those documents, and how to view those documents once they are in the My Health Record system.

Advance care planning is about enabling patients who have decision making capacity to plan for their future medical treatment and care in case there comes a time when they're not able to make or communicate their preferences or decisions. It's an opportunity to have a conversation with patients to plan about their possible future needs and to discuss their personal values and healthcare preferences both with you as a GP, their wider healthcare teams and, very importantly, their family and close friends.

Advance care planning is about helping you to understand your patients’ values and treatment preferences and to provide person-centred care throughout the course of their illness.

It's really important that it’s undertaken while patients have the capacity to express their values and the directives for their care they wish to receive if they become too ill or impaired to make or communicate their decisions.

Advance care planning may involve appointing a substitute medical decision maker, so saying that there's someone that they want to make the decisions, if they are unable to write a value statement that describes their goals of care or they may develop a specific and instructional advanced care directive.

For advance care plans to be effective, family members and treating clinicians need to know they exist and be able to access them. And in some senses, I’d say the conversation that you have with the patient and their family if they’re present is almost more important that the final document itself.

Having said that, having a written form is always very helpful because we all know that our recollections can vary a little bit.

If your patient creates an advance care directive, this is considered a legally enforceable document, and it must be implemented as part of the clinical decision-making process as far as possible for a patient who lacks capacity to make decisions.

Of course, being in the fabulous federation of Australia, the rules regarding advance care directives differ between states and territories. We've got some references towards the end of the slides about the Advance Care Planning Australia website, which contains specific information for each state and territory.

Advance care planning is important, and it benefits everyone involved in your patient’s care. It helps to ensure that your patient has the care that they would like to receive, and it can certainly improve your patient’s certainty and reduce their anxiety about that kind of care.

I think it's really helpful to help reduce family members’ anxiety and stress during illness, especially at end-of-life care. It's always a difficult time to talk about, but when people are acutely unwell or imminently dying, that's even harder than it would be in your normal day to day activity.

We also know that advance care planning improves adherence to patients’ preferences, both for ongoing care and the end-of-life care, making sure that it's consistent with their beliefs and values, as well as reducing unwanted interventions and non-beneficial transfers to emergency departments and other acute care facilities.

So as a GP, you're really well placed to undertake advance care planning and to facilitate it. You have an ongoing and trusting relationship with your patient and you are well positioned to discuss their future care when they have their decision-making capacity.

An advance care planning conversation could fit in well as part of an ongoing health assessment. So many doctors will be performing 75+ health assessments on the Medicare systems and an advance care planning conversation fits in really well as part of that health assessment.

It can also be really important when you're giving advice on options for any current or new diagnosis.

And I think GP’s have a really good mixture of clinical knowledge and understanding, communication skills and a long-standing relationship with patients and their families that really helps them to explore these potentially difficult decisions.

The RACGP Standards for General Practice (5^th edition) recognises that advance care planning is part of providing continuous comprehensive care. So that's in the criterion GP 2.1.

To support your patients with advance care planning, you might look to develop some systems within your practice to support advance care planning, as part of routine patient care. This might include things such as creating a team approach, identifying priority groups of patients who will benefit from care planning, providing education for practice staff regarding the discussions that they can have with patients and establishing systems to store and share your patients advanced care planning documents.

There's heaps of information on advance care planning and general practice in the RACGP’s Aged Care Clinical Guide or the Silver Book.

You'll find a link to this resource in the webinar resources pack. One of the things I really like about it is that it’s got some really good suggested language, particularly for people who are imminently dying about establishing that care planning process.

Advance care plans - or the documents that you produce as part of the plans - can include a number of elements. One of the most common things is that a patient can appoint a substitute medical decision maker to make health care and treatment decisions on their behalf, when they are unable to make these decisions for themselves.

Their details need to be documented and the substitute medical decision maker also needs to document their agreement to undertaking this role and to confirm they understand the responsibilities of the role. In some states, this can be done as part of an enduring power of guardianship, but it can also be done as part of an advance can plan. Again, the requirement for the documentation and the accepting of that understanding vary a lot between states; the Advance Care Planning Australia website contains a really good spread of information about what is required in which state.

You may have heard of the advance care directive, which is a specific document that patients make to establish their preferences about types of treatment they would want in specific circumstances when they are no longer able to make the right decisions.

It really is designed to make it clear that their family and their healthcare providers are aware of these decisions, and it might include things like what medical treatments your patient would want to have, ranging from things as simple as symptom care at end-of-life, hospitalisation, all the way up to things like life-prolonging measures such a CPR, incubation, ICU admission, artificial feeding. I think using a ladder approach is a really helpful way of establishing those things. Many people are happy with symptom-control type measures, but some people are really against the idea of morphine and just want to die a very natural death.

So advance care directives are legally binding and it's really important that you're aware that it’s preferred that patients complete the advance care plan template that's provided by your state of territory. But they don't need to be in a particular format, or follow any formal requirements so it's very easy to establish a legal directive, even without using the specific form that the government has produced.

More information about the specific legal requirements – again, because it varies from state to state - can be found on the Advance Care Planning Australia website.

Finally, a goals of care document provides information about medical and non-medical goals of care in relation to a specific episode of care. An advance care directive looks always to the future, but a goals of care document is about a particular admission or during a particular treatment program for a cancer.

A goals of care needs to be agreed by the patient and their healthcare provider, and it should involve their family and carers as well.

There's a trial currently being conducted in Australia by WA Health and various health care services to create these goals of care documents for patients to plan medical treatment in the event of clinical deterioration. So, for example, during admission to hospital. And the intention of this trial is to ensure that this care is delivered in line with patient preferences and also to improve the uptake of advanced care planning in general. One of the real key components is the uploading of goals of care plans to the My Health Record, and these are developed in the context of end-of-life care.

I think GPs still have a role in these kinds of documents, because in the documents I’ve seen from the trial they remained quite clinically centred, and you may find that you have a role in exploring the implications of a particular procedure or decision with the family, or with the patient.

So, you've had the conversation, you've prepared a document, now it's time that these documents are managed and shared so that they are accessible when they are needed.

It's really important that you keep a copy of any document that's produced as part of a care plan as part of your local medical record, and your patient should also provide copies of these documents to any other health care professions involved in their care, and they should give them to family and friends and their substitute medical decision maker if they have one.

One of the real challenges of this care planning process is ensuring that an up-to-date copy of relevant documents is accessible to the treating doctors. And we're hoping that better linkage with the My Health Record system can be a solution to this challenge.

At the moment, patients can upload a copy of their advanced care directive to their My Health Record and this makes it available to healthcare providers would are connected to My Health Record and who are involved in their care.

Your patient can also add information about an advanced care document custodian to their My Health Record, so that means the person or the organisation who holds a copy of the advanced care planning document.

Including those details enables other healthcare providers to contact your patient’s custodian to discuss their preferences of care and that custodian might be a trusted friend or a close family member or even their GP.

Currently, there are no clinical information systems that have the functionality for GPs to upload these documents on the patient's behalf, but that functionality is being looked at down the track. At the moment the patient has to do the uploading, or the person who controls the patient's My Health Record if they have someone assigned to their record. Doctors can't do that at this stage.

The Australian Digital Health Agency has released a set of national guidelines which assist healthcare providers in supporting patients who want to add their advance care planning documents to their record.

And those guidelines provide information about how to store and access documents related to advance care planning, and the goals of care discussions that occur in the context of end-of-life care.

Again, the guidelines do have great potential to assist patients and healthcare providers to engage in well-informed shared decision-making processes, and we’ll include a link to the guidelines in the webinar resources pack.

While you may not be viewing advance care planning documents in My Health Record at the moment, it's important to start the conversation and let your patients know that they can upload these documents.

For those of you that are using My Health Record actively, you'll be aware that there's real benefit to the patient having their documents stored and accessible securely to those involved in their ongoing care.

Many clinical information systems connect to the My Health Record system, and if your patient has uploaded an advance care planning document, then you should be able to view that using your GP software.

It's generally found under the ‘documents’ list, but you may need to adjust the filters to ensure that the documents are showing. If you're not sure, it’s worth checking with your vendor. Some software does provide a flag or another indication to say that this My Health Record includes advance care planning information.

If you're using a clinical information system that doesn’t provide access to the My Health Record, so, for example, many hospital systems, you can still use the National Provider Portal to access your patient’s health record overview, and that indicates if an advance care planning document has been saved. You can download it using the National Provider Portal.

If you've not used the portal before, I have to say it's actually a really straightforward method of getting into My Health Record, so if you're in a setting where you don't have integration with your local information system it's worth getting onto the National Provider Portal at some stage and just exploring what functionality is available.

It's fairly straightforward to register and access. You can do it in the same way that you might access Medicare’s health professional online services.

There are lots of people talking about advance care planning, and its real focus for the many sectors of the healthcare industry at the moment.

The RACGP, the Australian Digital Health Agency and the Advanced Care Planning Australia organisation have a number of useful resources available, and we will put links to these in the resources pack which is available to download on the RACGP website where you've accessed this webinar.

So that brings us to the end of the presentation, thank you very much for joining us. I’ll hand back to Angela.

Ms Angela Parker:

David, thank you for delivering today's webinar and thank you to all of our attendees for viewing.

If you have any questions, please email the RACGP Practice Technology and Management unit at ehealth@racgp.org.au, and the team will get back to you within two business days.

The webinar resources pack is available to download from the RACGP website where we joined this webinar from.

You can also stay up to date by subscribing to the monthly RACGP Practice Technology and Management newsletter; the subscribe link is included in the webinar resources pack.

We hope you found this webinar informative. Thank you for attending and we hope you'll join us for a future webinar in our Practices Essentials Webinar Series.

Thank you and goodbye.