The need for families to talk about ‘advanced care planning’

I would like to begin my address-in-reply speech by thanking the people of Forrest for re-electing me as their local member. I will continue to work with them and for them both here in Canberra and within the electorate itself. I would like to thank those who did so much to help me throughout the campaign.

I would also like to congratulate and welcome all of my fellow coalition members, especially those new to this place. I see the member for Hume is here, and I welcome him. The coalition has come to government at a critical time for Australia’s future when a safe pair of hands is essential for our long-term sustainability.

The shifting of world economics is far from over and this will occupy much of the government’s time over the next few years.

I want to touch on a particular issue. As well as working on various standing and parliamentary committees, I am co-convener of the Parliamentary Friends of Primary Producers and co-convener of the Parliamentary End of Life Care Friends Group, which I want to talk about today.

This is a really sensitive issue that is very difficult to talk about. Every single one of us over the age of 18 needs to plan ahead. Planning ahead involves thinking about your future and putting things in place so that your choices will be known and acted on if you cannot express those choices yourself at some time in the future.

I know this is incredibly sensitive and is really difficult to bring up in conversation, particularly with those you love the most. They find it difficult as well as you. I hope that over time this conversation we have with our families will become a normal part of life. I encourage members to think about this.

We actually need to talk about planning ahead with our families and we need to talk about our own advanced care planning. Advanced care planning is not euthanasia.

It is about you and me making decisions about our future and about our personal choices. It is actually about taking control of our own healthcare wishes and choices. It is the process of individuals discussing and making decisions about future health care, medical treatment options, lifestyle and even finances.

You need to think about these things. Why? Just think what you would do if you became very sick, had a dreadful major accident or developed dementia and you simply could not express your choices—you could not talk to your doctor or your family—and you could not manage your own treatment, health care, lifestyle or finances.

Now we all know that, unfortunately, accidents happen every day in one form or another and so this is for that particular day when you cannot talk about your choice of where you want to be, who you want around you and you cannot make people aware of just what it is you want and how you want it.

Advanced care planning and planning ahead is the process to help you have your say in how decisions are made for you when you can no longer speak for yourself, to plan your medical and personal care well ahead of the time that you might actually need it—you hope that you won’t need it until a very advanced age, but you just do not know—so that, if at any time throughout your life you become too unwell or unable to make decisions for yourself, your wishes, as far as it is practicable, can still be respected by your healthcare team, your family and your carers.

This gives both you and them the chance to prepare for the future. With an advanced care plan you can actually stay in control of the decisions that affect your care, even when you are not well enough to say so. I think we should all have an advanced care plan once we are over 18 years of age, because none of us knows what is ahead. Accident and illness can strike at any time throughout our lives, and no-one is guaranteed tomorrow.

I met in this place a wonderful young woman with dementia who is 28 years of age, which really brought it home to me how important planning ahead is and how it will give you and your family peace of mind now and throughout your life. There will be a process in place. You will have told your family what your wishes are.

This is really especially important, and I encourage people who might find themselves in this position to do it now. It is important for people who have a chronic or life-limiting health condition, for people who are entering residential care facilities, and for people who have a condition that may lead to a loss of capacity to make decisions in the future, such as dementia.

It is also important for those who believe their family may have different views or beliefs to their own, and that is something that happens throughout your life.

This type of plan gives you control and immense confidence that your wishes will be respected. It takes the pressure off you, it takes the pressure off your family, and it gives your family and carers a very clear direction. They know what you want, how you want it and they understand why you want it.

If for whatever reason you are unable to understand or communicate your wishes and decisions about medical treatment and end-of-life care, remember that if you do not do it, then others will and that it is often your family members. They will decide things for you.

They will have no choice but to make decisions on your behalf and hope that they get it right. For those of you who have been through this with your own loved ones, you will know how hard it is for families to make decisions following a major accident or after the diagnosis of serious or debilitating illness.

It is incredibly stressful, and I know it well, and it hurts those involved. It is actually an emotional rollercoaster trying to decide what is the right decision, what is the best decision.

What would your loved one want? What is possible and what is the right thing for the person that you need to provide that care for? What I do know is that often the guilt and grief from making these decisions stay with family members for the rest of their lives.

They will worry constantly that they may not be doing what you really want done. So if you have not discussed your wishes and decisions with your family, your friends or others, and have not written down something to guide them, they will not know what you want them to do.

This is the reason to have the conversation with your family and those involved in your health care; this is the reason to write down your wishes in an advanced care plan—that is, to save your family the stress and pressure if there is an emergency or a debilitating illness.

It enables you to stay in control of your care. You can revise or change your plan whenever you choose. It is only going to be used if you are unable to make decisions or to communicate on your own behalf. So as you move throughout your life, you can just change it. It would be a practical plan that your family, your doctor and your healthcare team are guided by when the time comes—if it comes—and hopefully not for a long time.

When I looked at this I drew on some information funded by the department of health and ageing, Palliative Care Australia and Alzheimer’s Australia for information on how to plan ahead and write an advanced care plan. If it was me, I would start with it as a work in progress.

I think we really need to think about this, and it is a tough one to do. I would put a piece of paper on my fridge or on my benchtop and I would think about the plan as I went along throughout the days, and I would add to it as I thought about it over time. Alzheimer’s Australia’s Start2Talk plan focuses on these six simple steps.

No 1: start to think about your future; get an understanding of your health conditions and how these might affect you in the future.

No. 2: sort out your financial issues and organise someone who can manage your affairs if you cannot do this at some time.

No. 3: choose who will speak for you. Make sure it is someone of your choice who will make decisions about your lifestyle and health care if you cannot do it.

No. 4: express your health and care wishes. Consider writing down your values and wishes in an advanced care plan, and make sure you give copies to your GP and to anyone who may be called on to make a decision on your behalf in the future.

No 5: just talk about this. Discuss your plans and talk to the people who may end up making decisions for you, about your values and wishes regarding the types of care and interventions you would want for yourself towards the end of your life whenever that is. And No. 6: review these wishes and plans by discussing these over time because your wishes may change as your health and lifestyle change.

There are worksheets and resources available on Alzheimer’s Australia’s Start2Talk website, but when I look at the Department of Health’s and Palliative Care Australia’s information, the advice is similar on how to write an advanced care plan. This can often be referred to in other states as an advanced care directive or a statement of choices.

Again, it is important to check the name given to this document in your own state or territory, and the procedures you need to follow in your state. The general information provided said the same thing: think about the values and beliefs that are important to your life; think about your current health, possible future health issues and possible kinds of outcomes—quite a similar process; talk to your family, your friends, your doctor and the people you trust about your wishes, and choose someone to be your substitute decision maker, general or enduring power of attorney, or enduring guardian, depending on your state’s legal requirements. Check these legal requirements where you live.

The Public Trustee or Office of the Public Advocate can help with this information. But you need to ask yourself when you do this for yourself: am I confident that this person will make decisions based on what I would want? Make sure this person is one you can trust; a person who will listen very carefully to what you want your values and your future care to be, and who will follow your wishes to the very best of their ability.

Make sure this person will take the process and your wishes as seriously as if they were their own wishes. And write them down. There are specific documents you can use, and I know there are some people who also include things like whether they want to be an organ donor or not.

One important piece of advice is: once you have thought about it, discussed it and written it down, give copies to your family as well as to your doctor, and your local hospital perhaps, and to anyone you think needs to have one—so that they know what to do.

There is no point in having a plan and going through all of that process, if people do not know about. You need to let them know. Don’t leave it locked away somewhere ‘safe’—because they will never find it. These plans are in addition to your will.

I know how difficult it is to have these kinds of conversations. I know that when I first said to my daughter: ‘I need to have a talk to you about what I want, when either I cannot speak myself or I am at the end of my life’, her first reaction was, ‘Hey, mum, I don’t want to think about that yet.’ But when I explained why, she understood that this was important for her as well, and that this would give her peace of mind, because wherever possible she would be doing the things that she knew I wanted done—no guesswork, no agonising over the where or the how.

What was even more interesting was when I then turned around and asked her—she is over 18—what she would want me to do if she was not well enough to speak for herself. I said that she needs to make the same sort of plan. Up until then, it was something she had never thought about. She is young, and none of us think we are going to need to deal with this until we are really old—but that is not how it is. Accidents and illnesses happen daily, and we all hope it is not us.

But it is somebody. We all need to be prepared. So please, think about planning ahead. Think about an advanced care plan or directive. Take the pressure off yourself and your family.

I want to talk briefly about the fact that the coalition led the world in prioritising dementia. Our Prime Minister, Tony Abbott, then health minister, committed $320 million to help fund the dementia initiative, making dementia a national health priority. The coalition’s fight against dementia involves a commitment of $200 million over five years.

Already, we have some of the world’s best neurologists and scientists committed to improving treatment, providing early interventions and ultimately, we hope, arresting dementia. This commitment will greatly enhance those efforts.

This dementia funding will prioritise additional funding for research and projects in health and aged care, working with the National Health and Medical Research Council and the Australian Research Council, and boosting the numbers of Early Career Research Fellowships, Postgraduate Scholarships, Career Development Scholarships, and future fellowships for dementia researchers.

These are great opportunities for our future scientists to improve the capacity and dementia research. The funding is there.

Now, in a sense, why dementia? I lost my own mother to complications caused by Alzheimer’s dementia. It is a dreadful disease for the person and for their family—as it was for that great young woman I met. There is, as I said, the shock and horror of the diagnosis.

For my mother, there were her desperate efforts to retain her dignity despite what was happening to her, and her confusion—despite what this disease did to such a capable and intelligent person. One of the other things that I would encourage others to do is something like what my sister and I did: we went to a workshop to understand how to deal with this disease and how best to help our mother We needed to know what she wanted.

So, when she was able to talk, I asked her: ‘Tell us what you want; tell us how best we can help you at this time.’ And she certainly did that.

This is probably the toughest discussion you will have, and it is the toughest discussion your family will have—but, as I said earlier, please have the conversation. Please start the conversation about what you would want. I will be encouraging as many people as I can, irrespective of their age or their stage of life. It is so important to make these sorts of plans. And irrespective of the situation in which we find ourselves, we all owe it to our families and friends to make it easy for them.

If you do have a major accident, or if you are diagnosed with a terrible illness or condition, sometimes—and we know this is the case with some of the cancers—the diagnosis comes not long before you pass away. There is so much to deal with, and so much emotion, it is really difficult for the person to think straight at that time.

But if they have this sort of plan in place, it takes the pressure off. They can concentrate on dealing with the illness itself, on dealing with how they are feeling, and on dealing with their family’s feelings. All of us—if it were us at that time—would agree: the one thing we would want to do is take the pressure off those whom we love most.

We will know what we are going through ourselves, and we will see it is having the same impact on them. And often, families will feel helpless; they will know they cannot help in practical terms; and they may know it is a terminal condition. I

n that situation, this type of plan helps everybody. You will know that your family will do the things you want done. It certainly will help them—even after you have gone—because they will know that everything they have done is what you had wanted.

They will have done their very best for you: they will know what it was you wanted, and they will have done their best to deliver that. That could well be the most important reason of all. I welcome all of the new members to this place.