Webinar: Advance Care Planning and Dementia
Dementia Australia webinars are free videos where subject experts discuss topics relating to dementia for a general audience.
As dementia progresses, you may no longer be able to make complex health decisions on your own. There may come a time where your family or others may need to speak on your behalf about health care if you become seriously ill.
It might be hard to think and talk about, but by communicating your decisions now, you can make sure your wishes for health treatment in the future are respected.
In this webinar, Clinical Nurse Consultant Deborah Sullivan explains Advance Care Planning and how living with dementia may shape the way you describe your quality of life, health outcomes and how you approach your final days of life.
You will learn about:
- Advance Care Planning and how it can support you and others make health care decisions if you become seriously ill
- how living with dementia might shape your values and preferences for future health care treatments
- the steps to build your own Advanced Care Plan
- the ways you can share and store your plan, so that people can access it when it’s needed.
Transcript
[Beginning of recorded material]
[Title card: Dementia Australia]
[Title card: Advance Care Planning and Dementia]
Hello, and welcome to you from wherever you are watching this webinar. My name is Deborah Sullivan and I'm a clinical nurse consultant working with Dementia Australia. Today, it is my pleasure to speak with you about Advance Care Planning within the context of Dementia. I'm presenting today on the lands of the Awabakal people, and I would like to acknowledge the traditional owners of the land and pay my respects to those past, present and emerging.
Today, we're going to talk about Advance Care Planning and living with dementia. You may hear this topic expressed in other ways such as 'future planning' for health events or 'advance care directive', but essentially, we're talking about the process; to understand what you would want those around you to know if you could no longer make health decisions yourself if you became seriously ill or injured. This webinar is designed for people living with dementia and their families. So, over the next 20 minutes or so, we will discuss 'What is Advance Care Planning?', including the difference between 'Advance Care Plan' and 'Advance Care Directive' and this is where understanding decision-making capacity is important.
We'll then discuss how living with dementia may shape the conversations you have about the different parts of your plan, and we will meet two people, John and Susan, both living with dementia with different experiences and different levels of capacity. I will then share with you some parts of the advance care planning process that others living with dementia have found challenging and some of the ways that they have overcome them. And finally, we'll speak about what may be the most important part, 'How to share and store your plan'. So, let's take a deep breath and start from the beginning.
What is Advance Care Planning? Put simply, Advance Care Planning is a process that allows you to share with others what healthcare decisions you would like, or to refuse, should you find yourself in a position where you are seriously ill or unable to communicate your decisions. So let's go through that again, as there is a lot of people, thinking and actions in that definition. Advance care planning allows you to share with others what healthcare decisions you may or may choose to have or refuse to have, should you become seriously ill or injured or unable to make or communicate decisions about your treatment and care yourself. So, as we've just learnt, it's a process which can be broken down into two main parts. The first part of the process starts with you, thinking about having conversations with your loved ones and often your medical team, so that you can express to them your values and preferences regarding your health future.
Some examples are: ‘What are the things in my life that I value the most'? This might be my faith, my connection to country, my connection to my family, or perhaps my career. It's all about you. The second part is to write these discussions down so that your family and your medical team have access to your wishes when they need them, such as an unexpected illness. The main aim is to enable you to make decisions now about the healthcare you would or would not like to receive in the future, which may also include what you would like to occur in your final days of life. So, the advance care process can seem very complex and overwhelming so to help you navigate this process, there are some great national and state level documents to help you. And the exact name of each document will depend upon what state you live in.
Choosing which document is the right one for you as a person living with dementia, or if you are the substitute or supportive decision-maker for a person living with dementia, is very important. With the key difference centering on if the person living with dementia has the 'decision-making capacity', which we will cover shortly. This will determine whether the document you use is an ‘Advance Care Directive’ or an ‘Advance Care Plan’.
So, let's have a look at an Advance Care Directive first. An Advance Care Directive is created and signed by the person living with dementia. It outlines their values, life goals, preferred outcomes, and directions about care and treatments, and may include appointing a substitute decision-maker. Once signed by the person, it is a legally binding document, but unlike other future planning documents such as a ‘Will’ or ‘Enduring Guardian’, it does not need to be signed by another person other than the person living with dementia for it to be valid. However, it is recommended that the primary medical professional, usually your GP and a family member sign the document to indicate that they have cited the document and the information within it.
An Advance Care Plan is different, in that, it is often created by someone else as the person living with dementia no longer has decision-making capacity and this is usually the substitute decision-maker's responsibility. The document itself still outlines the values, life goals and treatment decisions of the person living with dementia, but it is based on what the substitute decision-maker feels best represents, what the person with dementia would've said if they were able to. This means, standing in the shoes of the person and seeing the choice to be made from the perspective that they would have made. They're often helpful in providing information for substitute decision-makers and health professionals and may guide care decisions, but they are actually not legally binding. So, let's put those side-by-side. An 'Advance Care Directive' is created and signed by the person and is legally binding. An 'Advance Care Plan' is created by a substitute decision-maker, and while not legally binding, is used as a guide.
So, let's now talk about decision-making capacity. It's important at this point to take a deep dive into the concept of decision-making capacity. We'll talk firstly about decision-making capacity in general terms and then we'll extend that to living with dementia. Once again, there are some variations between states and territories, especially when it comes to more legal documents such as Wills and Power of Attorney. But in general terms, when a person has capacity to make a decision, they're able to do all of the following:
- Understand the facts involved.
- Understand the main choices.
- Weigh up the consequences of each choice.
- Understand how consequences affect them.
- And finally, they must be able to communicate their decision.
So, let's now look at decision-making capacity and living with dementia. It's important to state that all adults, including adults living with dementia, are assumed to have decision-making capacity unless it has been proven otherwise. Another way to think about it is that a diagnosis of dementia does not automatically remove your capacity to make decisions or express your wishes. This assumption certainly extends to the legal and healthcare space, which is where I'm placed. We must assume that the people we interact with have capacity, and there are some specific guidelines, tools, and assessments used within these professions to help us determine if decision-making capacity is no longer sufficient for certain decisions.
However, it is important to talk openly about the challenges that you may face living with dementia as it will affect your ability to maintain decision-making capacity. Again, put simply, as dementia advances, your legal capacity to make and communicate decisions about everyday life, health, and end-of-life care may become insufficient. At this point, you may be thinking, "Why is it so important now, that I have a diagnosis of dementia to build my advance care plan"? "Why can't I just say the things I want to say when they happen"? Or what I hear often is, "Surely my family will know what I want?". For some listening today, perhaps you have been diagnosed quite recently, and you are still working, driving, managing a career and household and are continuing to make all your decisions, including financial, legal and medical. For others listening, you may have been living with dementia for many years, perhaps more than a decade, and you may be wondering, if asked by your doctors about a treatment plan that requires you to consider several complex decisions, all with "pros" and "cons". Would you be able to answer and come up with a decision yourself? Or would you find that this is particularly complex?
For others listening, particularly for those who are caring for a loved one living with dementia, you may already be helping them make health decisions, or it's expected that you will do so in the future. So it's important to recognise that everyone's experience of living with dementia is unique and there are many different types of dementia and symptoms that may present differently in different people. But regardless of the type of dementia that you have, we know that dementia is a life-changing condition and overall will impact your memory, mood, emotions, and the ability to plan and make decisions.
As dementia progresses, there may come a point where some questions and concepts about your health, you may no longer be able to understand or respond to on your own. Put simply, living with dementia means that there may come a point where some questions and concepts about your health, may no longer be able to be understood or responded to. So how do we determine if a person living with dementia no longer has capacity in making future health decisions? Sometimes the answer is clear, based on the level of support the person needs to complete daily tasks and activities. Sometimes, it is very clear that the person living with dementia is able to demonstrate their decision-making ability and sometimes, it can actually be unclear. Or it can indeed change, depending upon the complexity of the health decision, the current health of the person, other stresses, and many other things. But once again, I would just like to stress that as health professionals, we must assume that the person living with dementia has capacity until it's been determined otherwise.
So, who can help if you're not sure? One of the first people to think about is your GP. If you have a Geriatrician as part of your treating team, they can also assist. A Solicitor certainly has some assessment tools that they use, although as I said previously, Advance Care Planning and Advance Care Directive, does not carry the same legal responsibilities for the Solicitor as say, a Will, Enduring Guardian or Power of Attorney. And there may be other members of your healthcare support team as well that will be able to support you.
So, let's just take a moment to talk about what a substitute decision-maker means, particularly a context of what I hear often, "I have an Enduring Guardian document, so isn't this enough"? An Enduring Guardian is legally appointed by you to manage your healthcare if you're unable to communicate or make these decisions. The document itself may not actually contain sufficient information regarding what healthcare treatments you would like to have or refuse, should you become seriously ill or injured. So, what I often say through my work, is "let's have a look at that enduring guardian document, let's see if there is enough information in there for your family to understand your values, preferences and wishes". Often, there isn't enough information and so the completion of Advance Care Plan or Advance Care Directive becomes incredibly important. So, to help put some of what we've spoken about into daily life, let's take a look at two people living with dementia, John and Susan. Let's hear more about them, how they move through their daily life, and consider the type of capacity each may have in terms of making complex health decisions.
So, meet John. John is 67. And he's living with his wife in their home in the ACT. John was diagnosed with Vascular Dementia two years ago. He retired from his banking role earlier this year as the demands of working with complex data and reports was no longer possible. He rides his bike to the local cafe most days, reads spy novels in the afternoon if he's not picking the grandkids up from school a few days a week, helps them unpack their bags and prepares an afternoon snack for them all. John is seeing his knee specialist next week to discuss if he needs a knee replacement. So, talking to the knee specialist, the specialist is actually happy that John has the decision-making ability to decide between three treatment options, and John has indeed agreed to have knee surgery. As part of the pre-admissions paperwork, there's a question. "Do you have an Advance Care Directive"? Given what we know about John so far, and that the knee specialist has actually determined that John does have decision-making capacity, do you think John would be looking at preparing an Advance Care Directive or an Advance Care Plan?
In this instance, it's an Advance Care Directive as John does have decision-making capacity. As John lives in the ACT, the Advance Care Directive that he would be provided with to complete, is actually called a "Statement of Choices".
Let's now meet Susan. Susan is 69 and lives with her daughter Anne. Susan has been living with Alzheimer's for eight years. Anne has taken on the role of her Mum's full-time carer in the past two years. Anne helps Susan with daily activities such as helping her get dressed for the day, arranges and drives Susan to appointments, makes Susan's lunch and dinner and setting the TV to her favourite channel each night. The next GP visit is an overall health check, and the GP mentioned she wanted to talk about advance care planning. Anne was asked to have a look at the Enduring Guardian document created several years ago and see if there were any wishes about health decisions within this document. So, Anne and Susan are now in the GP's office. As the GP is talking to Susan directly and asking her questions about her values and preferences for future health decisions, Susan smiles and nods when she's asked a question but she's not able to communicate or answer any of the questions specifically when asked about life-saving care, her values or her wishes for the future. After this conversation and a series of assessment tools used by the GP, the GP advises that Susan no longer has the capacity to make decisions about her health on her own. And Susan, as the Enduring Guardian, would need to think about what her Mum would or wouldn't want in terms of treatment in the future, including any life-saving care.
Given this scenario, which document do you feel would be more appropriate for Susan? An Advance Care Directive like John's? or an Advance Care Plan? In this instance, it would be an Advance Care Plan. A document that would be the responsibility of Anne as the substitute decision maker and enduring guardian to complete. As they both live in New South Wales the document that would be required to complete, now a lot of words, my apologies, is ‘Advance Care Plan for a person with insufficient decision-making capacity’. Just to note, this particular document is recognised in all states and territories, whereas the Advance Care Directive does differ from state to state.
So, now that we understand which document might be the most appropriate, you might be thinking, "where do I start"? The first one is always choosing the document that suits your needs best. Is it the Advance Care Directive? or is it the Advance Care Plan? If you are not sure, you are welcome to speak to your GP, Geriatrician and many other healthcare professionals to help you understand which one applies to you. Once you've chosen the document, find a quiet and comfortable place that gives you time to think and discuss the items in the document and my best advice is to just start writing. There is no right or wrong. It's about capturing what's important to you. Or, if you are drawing this up for a loved one, what do you think would be the most important if your loved one was able to speak on their behalf? So, as you move through these documents, there are a couple of sections that from my experience and talking to many people living with dementia, can be quite challenging to understand and put their thoughts down.
So, I'm going to share with you some things that other people who've gone through this experience have found helpful. When it comes to the section about talking about 'my values' this is trying to capture what you, as the person living with dementia, find, is determining your quality of life. There are statements about what you value and what are the most important to you. This might be your independence, your social connection, your participation in cultural activities. It may be that what you hold most dear, and what determines your quality of life day-to-day, is actually embedded in your faith, your family, nature, and connection to country.
The second area in which people find rather challenging is when you are asked to think about what would be 'acceptable' and 'unacceptable' health outcomes. This can also be expressed as 'bearable' or 'unbearable', depending upon what stage you're in. So, here I'm going to provide you some examples that might get you on the right track for what other people have found helpful. “Dad has always said he didn't want a machine to keep him alive”. So given that statement, or that understanding about their Dad, we would actually put that as an 'unacceptable' health outcome. In the event that her Dad required lifesaving support through the use of machines, her Dad would consider that to be an 'unacceptable' health outcome and would not want to agree to that.
Here's another. “Mum wouldn't want to be at home in pain because the stress that would cause the family would be worse for her”. So, in this instance, we would put this in two categories. We would actually put an 'unacceptable' health outcome, would be to remain at home if pain was not able to be effectively managed. But we might also put that an 'acceptable' health outcome may actually be that if the pain, if she was experiencing pain, was getting too much and was not being able to be managed at home, then, considering an admission to hospital for pain management, would likely to be an 'acceptable' health outcome for their Mum.
Here's another. “My wife has always hated going to hospital and would prefer not to go if there was little chance it would make her better. Try and keep her at home, please”. So in this instance, we would actually write that his wife would find going to hospital an 'unacceptable' health outcome and that an 'acceptable' health outcome and preferred place of death would actually be home. And lastly, “if I can see that I'm getting better each day, then keep doing what you are doing, but if I'm not getting better day-to-day, then please stop”. So, in an acceptable health outcome, we would write, "if it can be seen that I am getting better each day, then keep continuing with treatment". Therefore, an ‘unacceptable’ health outcome would be if, there was, on day-to-day basis, there was no improvement in health.
So lastly, let's talk about sharing and storing of your plan. Make sure that you've got a copy of your plan at home and while we don't expect you to keep a large document in your wallet, there are certainly some wallet cards which can be used. We recommend that you share your document with family, or if you are living alone, we recommend that you share with your neighbour. We recommend that you share with your healthcare team and there is also the option of uploading your document into 'My Health Record'. The question I always ask is, "Can this document be accessed quickly in an emergency"? and here is the Wallet Card that can be downloaded and printed from the Advance Care Planning Australia website and this can be kept in your wallet.
So, what did we discuss today? We discussed four main elements. What is Advance Care planning? To summarise, it's a process that allows you to share with others what healthcare treatments you would like to have or refuse, should you become seriously ill or injured and unable to make or communicate decisions about your treatment and care yourself. The next thing we talked about was Advance Care Planning and Dementia. The key points is that a diagnosis of dementia does not automatically remove your capacity to make decisions or express your wishes. However, as dementia advances, your legal capacity to make and communicate decisions about everyday life, and end-of-life care, may become insufficient. Third, building your plan. Determine whether it's an Advance Care Directive or an Advance Care Plan. Think about your values - 'acceptable' and 'unacceptable' outcomes and what you may want those final days to look and feel like. And finally, the sharing and storage of your plan. Think about where to store it at your home. Ensure your family are aware of the document, medical team, and you can use prompts such as the wallet card. So, who can help? Advance Care Planning Australia is one of the peak organisations that supports Advance Care Planning, and you can reach out to them via their website, and they also have the National Advance Care Planning Support Service with the number on the screen. For help specifically relating to advance care planning and living with dementia or for any other questions or concerns around living with dementia you can reach the Dementia Australia National Hotline with the information on the screen. Thank you for your time today, and I wish you well in the discussions and documentation of your Advance Care Plan.
[END of recorded material]
[Title card: Dementia Australia]
[Title card: National Dementia Helpline]
1800 100 500
dementia.org.au
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The National Dementia Helpline
Free and confidential, the National Dementia Helpline, 1800 100 500, provides expert information, advice and support, 24 hours a day, seven days a week, 365 days a year. No issue too big, no question too small.