Palliative Care and planning for End-of-Life Care

Talking about what matters

Page last updated: 17 May 2018

If we want to maintain as much control as possible over our choices, we need to start talking early about our end-of-life care.

Many of us are reluctant to have a conversation about what we want at the end of our lives, let alone document it. However, it’s only through these conversations and actions that we can communicate the care we want and the things we value.

It’s really important to talk about palliative care

Hi, I’m a former Wallabies captain.

Professor of Intensive Care at the University of New South Wales.

’m an Australian lawn bowler and I’m also a geriatric nurse.

I am a comedian, I’m also the patron of Palliative Care Nurses Australia and I’m just loving this set!

I’m a passionate foodie, and I love my mum. As dinner conversations go, no one wants to talk about dying.

Talking about dying is something that every culture in Australia has different approaches and different manners.

No one wants to talk about death and dying because, they, no one wants to think about their loved ones dying or suffering.

I hate the thought of talking about palliative care. I’d rather face the All Blacks, all 15 of them, any day, by myself.

I think people don’t talk so much about death and dying in the same way that they don’t talk about ageing.

Holidays, yes. Reality TV, oh yeah! Food allergies, you know. Menopause, hmmm. But death and dying, no way. You know—lalalalala!

But we actually need to talk about it, so that in the end we can actually help them, and they won’t suffer.

Certainly, from an Indigenous perspective, you know, I’ve been brought up not to talk about death, not to talk about, you know, the passing.

Food was obviously big in my home I mean, come on, that’s all we used to do as well as hang out with the family.

If we weren’t shopping for it, preparing it, cooking it, we were eating it.

And in fact, talking about end-of-life care was definitely a no-no, it was completely off the table.

The fear of death and dying I guess, could explain why we don’t talk about it so much.

But it’s quite obvious that the more that we do talk about it, the more that we accept it as natural and normal, then the less fear that there’ll be.

I talk about end of life, again, with my wife, with my son, with my daughter and they don’t like talking about it.

But it’s a fact of life, you know, you can’t live forever.

If I don’t talk about it, maybe I won’t die.

National Palliative Care Week is a great time to start talking to each other about your own wishes, so you’ve got control over your life, and you’ve got control about the way you die.

Well I’d like my death to be like my life, some quiet times, some noisy time. I want to be surrounded by my loved ones because we’ve always been a tight-knit, close family.

Taking me back to where it all began, where I grew up. This is extremely important.

It's taken us many a family gathering, of many a family meal. But at least now, mum and I have had the conversation about her end-of-life care and what really matters to her. In addition to wanting to live with me, and me wanting her to live with me forever as we do in our culture. I now know exactly what she wants, and I love that.

Look I hate to break it to you, but we’re all going to die. So, we might as well talk about it. After all, isn’t a conversation easier when we all have something in common?

So, this National Palliative Care Week speak to your loved ones. About what matters most to you for your end-of-life care.

It’s really important to have the conversation.

Resources like this conversation guide will help you get started.

For more information visit the website, or get your kids to visit the website.

Mum for more information, visit the website!

Authorised by the Australian Government, Canberra

Talking about palliative care

0:05 (Singing in Torres Strait Islander language)

0:14 Clicking sound

0:16 (Singing in Torres Strait Islander language)

0:21 It's very important to have the conversation

0:23 I think it's really important to talk about this stuff

0:26 It's very good and very important

0:29 to have that conversation

0:31 about palliative care.

0:33 Around our dinner table we talk about work, our life in general

0:38 It's just we talking about the old days when was little

0:42 Politics, state of the world

0:46 My son is into cars all the time it's like a twenty four hour conversation as well

0:52 Sport, sport is a big subject in our house

0:55 How we are going to build this, how we are going to pull that down

0:58 we never talk about dying

1:00 You don't, you don't speak about death, you don't expect to die unless your old

1:05 But you know it's a funny thing the children they don't want to hear about that

1:10 Why I can't understand

1:12 In our culture I guess its very hard for us to talk about,

1:16 looking after someone who's dying around us because we're men

1:22 I think you block a lot out of your mind because you just don't expect it to happen

1:29 Probably not looking forward to the day but then again, who is?

1:33 And who isn't?

1:34 And who knows what's going to happen?

1:38 I was diagnosed with

1:40 with Motor neurone disease in June last year, at the age of 47.

1:47 And he turns to mum and he says you've got Alzheimer's.

1:51 John,

1:55 he passed away

1:58 To see your son lying, your child lying there in bed

2:04 not being able to do anything and you know and he's crying, he's upset.

2:09 I'm crying, I'm upset. We're asking that, why?

2:14 I understood palliative care as the last stages of someone's life

2:19 where they get to feel a bit supported and comfortable even though they know they're going to pass on

2:24 I guess we'd spoken about it you know, on and off over the last you know,

2:30 twenty odd years that we've been married and sort of and I

2:34 maybe jokingly saying to Lisa I don't want to be a burden on anyone

2:37 I don't want anyone to have to wipe my nose for me for the rest of my life

2:41 Yes my daughter does know what I want

2:43 if anything happened to me and if she had to make that decision

2:47 It's the last act, your last transition.

2:52 (Sigh)

2:54 Yes well I hope they don't start fighting over who's going to get my house and all that after I'm gone

2:59 (Laughs)

3:00 (Speaks in Chinese)

3:02 My ma says she wont pass me any money, she only passes me love

3:06 If it's ok with my children

3:09 well I would stay with them as well unless they couldn't look after me

3:13 In aboriginal culture we like to all stick together

3:16 I'm still at home.

3:17 (laughter)

3:18 Ma's thing if one day she was really sick she still want to choose the medication

3:26 An advanced health care directive has a variety of elements to it

3:30 but one of the most important things is a directive to people around you

3:34 caring for you in the terminal phase of life about how you would like to be cared for

3:38 For the individual an advanced health directive will protect you.

3:42 It will make sure that your wishes are honoured.

3:45 It helps the family, it helps to understand the process

3:49 and I firmly believe it gives dignity to the person who's dying.

3:53 When the time comes, you need to know what I feel comfortable with and what I wanted

4:00 instead of having to guess that

4:03 at a time when you are least able to do so, when emotions are running so high.

4:08 So if people don't have an advanced health directive I see a lot of conflict

4:13 Lot of different ideas on what the individual would have wanted

4:19 I want the people in my life to know what I want

4:21 Palliative care is an approach to care which enables people to have good quality of life

4:27 even if they have a terminal illness.

4:29 So it goes right from the beginning of the diagnosis

4:32 to time of death.

4:34 It's not just about end of life it's, I've since found out that

4:39 you know a lot of motor neurone patients go into palliative care for little stints

4:44 like one week or two weeks to you know sometimes get their medications right and that sort of thing

4:49 Palliative care they were there with me all the way they were just beautiful

4:54 (Singing in Torres Strait Islander language)

5:01 I don't like my children to dressed up all black and

5:06 start you know be unhappy because I'm gone

5:09 alright they miss me I know they going to miss me.

5:12 they going to miss my cooking,

5:15 look after the children you know, I know that yes but

5:19 I don't, I don't want them unhappy because I gone.

5:23 It's a natural process that we go through, you know

5:26 we were born we live and we die.

5:29 I have often said to my mob you know when I go, take me to my country.

5:40 When the time come it doesn't matter if you're strong, rich.

5:45 I think its really important to have the conversation about palliative care

5:50 Have your family there with you, so they understand what palliative care is as well.

5:56 Bravery in the face of adversity is just you know, it blows your mind sometimes.

6:03 Singing in Torres Strait Islander language.

Authorised by the Australian Government, Canberra

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