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.

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.