Interview 25 - Living with dying

Age at interview: 41

Age at diagnosis: 24

Brief Outline:

Diagnosed with end stage Chronic Obstructive Pulmonary Disease in 1986. Also has early heart failure and severe osteoporosis, and is treated with medication, a nebuliser and oxygen.

Background:

Part time piano teacher, married, 2 children

For more clips from this interview click here.

It was very important to this woman with terminal cancer to die with dignity before becoming reliant on machines and to be remembered as 'the mum that fought to the end and just went to sleep'.

 I want to take control now. I don't want to be resuscitated. I don't want intervention. If it's going to happen, I want it to happen. I don't want to be in a vegetative situation where my family have to sit round a machine that's breathing for me and thinking for me. I want them to remember the Mum that fought to the end and just went to sleep.

Have you written this out?

 

I've written it out myself as I want and instilled it in a letter but I've got to... I've evidently got to get a proper “living will” done. I have notified my hospital that I do not want to be resuscitated, something I did have to rescind recently but it's back in place again now.

 

Why did you have to rescind it?

 

Because I had to have surgery on my mouth and it was just in case anything went wrong during it, but it would be a bit pathetic going out having your teeth removed. So, I decided after great talking with the doctor that I would agree to it being removed while that was being done. If anything went wrong they would resuscitate me but I was still tongue in cheek, well tried to be, while it was happening because I did feel that if I had to go out then, actually I didn't really want to come back. 

 

If I'd known, you know it was going to be so uncomfortable afterwards I probably would have changed my mind anyway. But apart from that, it's something I'm in the throes of sorting out. I will keep a copy with me at all times so wherever I am nobody tries to resuscitate me or if anything else comes along, that I will refuse treatment.

 

Have you talked about the kind of terms you've specified with anybody?

 

My consultant. We've talked. He's known me for a very long time, since I was a kid and it's hard for him. It's hard for me. He knows I will fight for as long as I can but he also knows that I will go with my dignity.

A woman with terminal cancer has carefully considered the implications and how she feels about assisted dying.

When I know I'm not going to be able to cope with life any more, the pain is bad now, I'm on morphine, I get a lot of break through pain. When I get to the pitch where I really can't cope with anything anymore, where my quality of life is totally gone, I will tell my husband I want a really good day out with the kids, which is when he'll know that when I go to bed that night I won't wake up the next morning.

Because you're going to take control?

 

Yes.

 

Have you talked to anyone else about that?

 

Yes I've talked to my GP about it. He wishes I lived in another country because that decision would be helped.

 

This is something I talked about to your friend this morning, and we talked about the Government's national policy on it.

 

Yes

 

On assisted suicide and euthanasia,

 

Yes

 

And how there's a lot of debate at the moment about this,

 

Yes

 

And I wondered like if you were in control of legislation what would you say should happen?

 

It has to be really carefully dealt with. I think that you have to really look into it seriously, whether this is the right thing for the right person because I think there is the risk it might be abused. But with myself if the legislation was there then it would be nicer for me so I'm not on my own which I know I will be because I don't want any of the family here when it happens.

 

Why don't you want anyone with you?

 

Because I don't want them involved, I don't want them to get in trouble.

 

You don't want them to get into trouble?

 

No. Which is a tough one.

 

But I shall concentrate on the day we've had out beforehand.

 

Will you explain it to them in a letter or...?

 

I've done it already yes. I've already written a poem to be read out at my funeral. I've written a letter to both my children. In the letter I've told them if they've ever been angry with me and they're feeling guilty please don't because it's no more angry than I felt at myself. I've given them permission to be cross at the end which I think is going to be important for them because they will be angry, they will be cross. They'll be hurt, they'll want to know, they'll be in denial that it's happened.

 

You've thought about it so deeply and so thoroughly haven't you?

 

Yes I've, I have because I wanted to stay in control. 

 

Well thank you for telling me all that because it's such an important,

 

Yes

 

Aspect of everything isn't it?

 

Yes, yes

 

And anybody like me tries with difficulty to put myself in your shoes.

 

Mm

 

No one can but respect what you said.

 

Yes. I think if some of these ministers and politicians who are against euthanasia, I often wonder if it was their life or their wife or mother how they'd feel then. I don't like my children seeing me in pain because it upsets them. I don't like being in pain but I have to cope with it. The one part I hate about being in pain is I get short tempered sometimes and it worries me if I've snapped at