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Summary

Chaplain Di helps the parents of an assault victim on life support, while Chaplain Julie supports a
patient struck down with an incurable disease.

Story producer: Paul Hawker, Richard Corfield and Kim Akhurst

Story researcher: Wendy Boyton

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Story

Geraldine Doogue Presenter

Every day in Australia there are over 40 thousand patients in hospital . . .

Doctor

If you can hear me stick out your tongue?

Narration Geraldine Doogue

While medicine tends the bodies, the chaplains tend the souls.

Luke's Mum

I think he's gonna die.

Dr Ray Raper Head of ICU Royal North Shore Hospital

It is a tough environment. I don't want anyone to think for a minute, that this is an easy job.
It's a tough job.

Narration

In this series we follow the chaplains' journeys, alongside the patients and families at three
major hospitals.

Dr Ray Raper Head of ICU Royal North Shore Hospital

This isn't about Catholic teaching or Jewish teaching.

Fr Jaison

Do you have some pain.

Dr Ray Raper Head of ICU Royal North Shore Hospital

This is about what's in the person themselves and that in their own spirituality express itself in
however that needs to be.

Fr Laurie

"in the name of the father and the son and the holy spirit"

Narration

Our chaplains are Catholic and Protestant, Muslim, Jewish and Buddhist. Regardless of their faith,
they all meet the same challenges.

Chaplain Julie

Working in the hospital challenges my faith - we want to be God sometimes but we're not God.

Chaplain Anwar

We don't have solutions, we don't have answers but we try to help.

Nurse

Needle now .....GASP

Narration

the pain of suffering . . .

Chaplain Di Roche

suffering makes us all introspective and we start to ask those meaning of life questions.

Narration

The power of love

Narration

This week: Chaplain Di stands by shocked parents. . .

Their son . . . A victim of a random bashing.

Parents

We all care about him

Narration

And Chaplain Julie supports Sandra . . .

Chaplain Julie

Hang On, Hang On.

Narration

Struck down by an incurable disease.

Chaplain Julie

She often says it's not fair and it isn't.

16.

Titles

HOSPITAL CHAPLAINS: It's Not Fair.

Narration

Julie Telfer is the Uniting Church Chaplain at Royal North Shore Hospital in Sydney.

Chaplain Julie

Morning Sandra.

Sandra

Hello my Angel

Chaplain Julie

How you going?

Sandra

Not bad, how are you?

Narration

Julie first met Sandra two years ago when Sandra was suddenly struck down with Devic's disease- a
rare and crippling illness that damages optic and spinal nerves.

Sandra

I came back from a holiday with my mother and my daughter and I virtually lost my right eye within
about two days and then the left eye started playing up and then I lost half of it vision on my
left eye so I can see Julie so I got that half and from there to my nose I can't see.

Chaplain Julie

She's had a really rough ride the last two years.

Sandra

I can't lose you I know that.

Chaplain Julie

It's been a very difficult diagnosis for her which came on as she said very suddenly with the loss
of her eyesight.

Sandra

I don't want to hold you up because you've got all these other patients to see.

Chaplain Julie

Well I'm here for you this morning.

Sandra

You are a gem.

Nurse

Just getting ready.

Sandra

It's affecting my bladder and if it spreads it could I couldn't walk.

Narration

It's estimated there are less than 20 cases of devic's disease in Australia.

Sandra

I have to pick the rare one don't I.

Chaplain Julie

This is the anxious part.

Sandra

I hate this part.

Narration

There's no cure. All that can be done is to prevent it getting worse through blood plasma
exchanges.

Sandra

There is a blockage there that's very weak that's what I'm worried about.

Did they use a tourniquet last time?

Sandra

No.

Narration

4 needles over 2 hours. It can take as long as two hours to get the entry and exit needles inserted
. . . and a further three to four hours to exchange six litres of sandra's blood.

. . . .it's an incredibly painful process.

Sandra

All these damn needles.

I hate it.

Chaplain Julie

It's a bit scary.

Sandra

I don't like this.

Chaplain Julie

No I can sense that

Chaplain Julie

Pastoral care is about sitting in a hole with the person. Climbing into the hole often and just
sitting there. Not to move them out of it or necessarily say it's going to be alright, because it
is probably not. But just to sit with, that's the role of the pastoral carer.

Narration

The cruel irony is Sandra used to work downstairs in this hospital as an anaesthetic nurse.

Nurse

Going to put the tourniquet on.

Narration

Now, the tables have turned: and she's the patient.

Extreme stuff happens when the needle goes in .

Nurse

Needle now ... another local

Narration

Downstairs at Royal North Shore's Intensive Care Unit Chaplain Di Roche, is checking on new
patients.

Chaplain Di

When I walk into each of the units in the morning. I get a sense of what's been happening overnight
with patients how they've been going before I start meeting families.

I've earned my money this morning and it's only 9 o'clock.

Narration

Most ICU patients only stay one to three days but

some, like Luke Harper ...

Dr Oliver Flower

Luke if you can hear me open your eyes.

Narration

Are here much longer.

Dr Oliver Flower

Luke can you hear me if you can hear me stick out your tongue.

Luke Open your eyes..if you can hear me stick out your tongue.."

Narration

A month ago this 29 year old father-of-three was viciously assaulted outside a nightclub and left
for dead.

Dr Oliver Flower

Luke's now 29 days after his injury. It's still quite early days in terms of traumatic brain injury
in terms of knowing how it's going to progress.

Narration

Luke - a salesman - is divorced, so four weeks ago parents Noel and Lyn came up from Victoria . .
.. Chaplain Di's been with them during their bedside vigil.

Lyn

She was sort of here as soon as I got here and she's been here every day since.

Chaplain Di

Being a parent with your child in a place like this, you know, it's every parent's worst nightmare,
I think.

Narration

After 4 weeks, it's still unclear if Luke will live . . . or die or be permanently brain damaged.

Noel

He was a guy with a brilliant future and we just hope that he can still have that future sort of
thing. He was a great salesman and could deal with the CEO's of the biggest companies to people
from ordinary little workshops and they all loved him. He was a fantastic guy. He didn't have a
mean bone in his body.

Lyn

That's why it is so.

Noel

He didn't deserve it.

Lyn

No he didn't deserve this.

Noel

If anyone was a good all round guy Luke was.

Chaplain Di

But when people come into this environment they are especially vulnerable.

It's something that is the responsibility for all of us who are working with these families and the
patients to make sure that we look after them and to help them along the way, stay the course.

You do what parents do huh...drop everything and here you are for your boy.

Lyn

Yeah, hopefully at the end of it all he'll be well and healthy .... And back to what he was.

Chaplain Julie

Hang on, hang on.

Narration

Devic's disease is sending Sandra blind and could make her a cripple. . .

Sandra

It's like a burning sensation

Nurse

Because the needle is just some in now.

Narration

Now she's undergoing an agonising blood exchange treatment.

Sandra

I'm gonna rewrite the ten commandments. Yeah. I must not swear.

Sorry Jule's if your arms going blue.

Chaplain Julie

So I'm there to help her out and just be with her to support her.

Sandra

Finger's numb.

Nurse

Another local.

Chaplain Julie

She often holds my hand reaches out and holds my hand which is a fairly powerful image // a "hand"
in there that isn't our own and also a hand that may be God's hand.

Nurse

If I move the needle can you still feel it.

Sandra

It's like a burning, but I'll put up with it, it should go away shouldn't it?

Narration

For Chaplain Julie, watching Sandra suffer her monthly treatment, raises questions about god's
role.

Chaplain Julie

I'm always challenged in the hospital setting, that, uh. Where God could possibly be at times.
Well, I think-I think i God suffers along side us. And that God is there, not as the all powerful,
but as the suffering God. And a God who can surround them with God's love.

Sandra

There ... Oh my God .... Sorry.

Aaahhh

Narration

Downstairs in ICU, Luke has been heavily sedated to give his bruised brain time to heal.

For four weeks he's been highly agitated each time he wakes.

Nuse

You're in hospital remember.

Narration

If he wakes peacefully staff will know his brain is on the road to recovery - but even then, it's
far from over.

Dr Oliver Flower

It's really hard to say what Luke is going to be like in six months or a year's time. Some people
make dramatic recoveries, even when they're this bad at this stage. And some people don't.

Chaplain Di

Today the patient may be doing well and then something happens, that can happen that can change the
course of it and they use the term roller coaster but we-we hear the families use it all the time

Narration

Luke's roller coaster ride has been particularly cruel for Noel and Lynn.

Chaplain Di

It's been a helluva time really isn't it and it has been a real roller coaster for you from what
I've seen as well.

Narration

Two weeks ago Luke briefly regained consciousness and was calm.

Noel

We saw how good he was that day in comparison to what he is now. We want to get him back to that
stage. And here we are 17 days after that and we still haven't got back there.

Dr Oliver Flower

He's had a couple of setbacks. He's developed pneumonia on a couple of occasions now and he's still
on the ventilator.

Narration

Luke's second bout of pneumonia two weeks ago brought Noel and Lynn to the brink of despair.

Lyn

They said it was critical again. And we came in and we sat on the couch right over near the window
and Di was in there and she came over after a little while. And she said what is going on? I said I
think he's going to die. And she said we all care about him and he's not going to die. She said we
need to sort it out straight away. Because she said we don't want you worrying like you are.
There's no need for you to worry like that. She said we've got to find out what's going on. And
then she went down and she found out and she came back and everything changed. All the doctors came
and spoke to us and the nurses and we found out he wasn't going to die. But we thought that he was
all that night, didn't we?

It was really terrible. And she was so caring. She was such a sweet person. She just came over and
she was really strong and she said "no, he's not and we're going to sort it out. So she did. She
did that. And I don't know what we'd do if she wasn't here. I really don't. Because that was a day,
that was the worst wasn't it?

Noel

Yeah, that was our worst day.

Narration

On the ground floor at royal north shore Chaplain Julie has been asked to join Sandra ...

Chaplain Julie

Knock, knock, Hello

Narration

... and her mum.

Narration

Sandra's had a big setback . Her painful blood exchange treatments have caused the veins in her
legs to collapse.

Sandra

To be quite honestly this has really hit me because, I probably don't show it but it has because I
really rely on this treatment and this leg to work. It's just one whole mess. You get over one
hurdle and you have to climb another one. So it's not fair.

Chaplain Julie

Being there for a patient is being the God person. And often when she says it's not fair, it isn't
fair and you can just be there alongside her in the unfairness which is where God is, in the
unfairness.

Doctor

Good day Sandra. How you going?

Sandra

Not bad.

Doctor

Now, um you've gone for the ultrasound. Now they've mapped your legs is that right?

Sandra

Yep.

Doctor

Did they map your arms at all?

Sandra

No ...

Narration

For her treatment to continue, Sandra must have an operation.

Doctor

If we're gonna put a plastic graft in, it' better to put it in your arms.

Sandra

Is it?

Doctor

Yeah, cos there's less chance of it getting infected.

Sandra

It's just frustrating ... You just get here then you come back the next week, I'm living here
virtually.

Narration

Sandra was raised a Christian but her faith has been sorely tested by her predicament.

Sandra

We do talk about religion, um and how things are with the Man above. To be quite honest I have my
doubts with him at the moment ...

Chaplain Julie

Often we want to know things. We want God to intervene. We want to be God sometimes, but we're not
God and God works in God's ways. And that is the acceptance that I sit in daily and I see it daily
and I've got to be comfortably sitting in that to do the job that I do.

Sandra

Now you'll be able to tell me today the decisions what you're doing and will it be long before I
have to wait to go to theatre?

Doctor

No way...there's no way we can put a graft in before then.

Sandra

Right ...OK ...

Narration

There's no quick fix. it'll be a month before surgery.

Chaplain Julie

It's about being, not doing. About being. A chaplain is just a person who's there with them. We
don't do we just be.

Sandra

September, tik aahhh.

Chaplain Julie

And it's amazing how much it helps a person to sit alongside them and acknowledge how they feel.
Not to try to make it better but just to acknowledge it. And not make sense of it because there's
no sense to be made of it. Often. More than often.

Noel

Settle down mate.

Narration

Upstairs in ICU, bashed father of three Luke, has recovered enough to be brought out of sedation.

Noel

Just relax.

Narration

But now, parents Noel and Lynn, are facing a new challenge.

Noel

Don't roll over mate.

Nurse

Luke come on come on just relax OK?

Doctor

The main issue that we're really dealing with is agitation and delirium as he's sort of waking up
from his traumatic brain injury.

Noel

Lie down, just relax OK. Just take it easy Settle down mate...

You're virtually holding them down sometimes and telling them that they have to stay quiet.

Lynn

Yeah, they're trying to slowly wean him off the sedation so they said you've got to expect this,
that's what happens when they come off it so this'll probably go on for a few days. It's not nice
to see him like this ...

Chaplain Di

Oh, does it make me question what's fair in life? Of course it's not fair, whatever fair is. Um...
Catastrophe can happen to anyone and that's what I see all the time. The unpredictability of life
Um... I don't know whether I think it's not fair or not but it frightens the daylights out of me at
times.

Noel

He certainly has glimpses of recognition; he knows what's going on. Sometimes his eyes will look at
you ...Mum's here with you. And Dad's here ...and you can see that he recognises you and what are
you doing, what are you doing this for sort of thing. You can see it in his eyes and it just, just
....

Chaplain Di

One of the things about this sort of chaplaincy is, if one isn't introspective before you start the
work you sure as hell become introspective doing it. And this is what I find with our families of
course. Suffering makes us all introspective. We start to ask those meaning of life questions and I
do so myself. I haven't come up with an answer. I come up with more questions. And that's probably
to do with my very questioning faith.

Noel

But gee this has brought me unstuck.

Lynn

Yeah when it's your kids it's hurting.

Noel

I don't think I've shed a tear hardly in my life.

Lynn

It's amazing when you see them here in the hospital bed.

Noel

You certainly, it's amazing just what it's like sitting there watching your son struggle.

Lynn

Yeah wouldn't wish it on any one.

Noel

Luke does, Luke, Luke ... That feel better

Narration

Up in the wards Chaplain Julie is calling on Sandra.

But a special visitor is stealing all the attention...

Chaplain Julie

Hi Sandra, Hi how are you?

Sandra

Instead of a Guide Dog, I want one of them. Listen to the noises, it's beautiful.

Narration

Ten days ago Sandra had her operation.

Sandra

And you can feel it but my leg is so swollen. I don't' like it. Now I'm on Warfarin and I'm like a
sprinkuler ..blood everywhere ... anyway ...

Narration

Sandra's been put on a blood-thinning medication, because - in yet another set-back - clots were
found on her lungs during surgery.

Chaplain Julie

It just got a bit overwhelming did it? Every time she comes it's a series of ups and downs and
disappointments. And the high and lows are very prominent with Sandra.

Well I've just found out the wheelchair situation it's on way. Liam on his way. He's gone and found
one.

Sandra

Good.

Chaplain Julie

So you feel well enough to go down

Sandra

...yes I like going downstairs.

Chaplain Julie

So we can escape from the Ward for a while ..

Sandra

(toot toot) Yes,

We're off...

Honestly Julie's been an angel to me. Right from the beginning of this disease.

If it wasn't for her I think I'd probably be really, I just don't think I could cope. Cos it's a
big hospital but Julie gives me the comfort and the ... just feeling I've got someone there that I
can depend on.

Narration

It's been 4 days since Luke was weaned off his sedation. His recovery has been so remarkable he's
been discharged from ICU. The trouble is, his body may be better . . . but his brain is still
recovering.

Luke

I'm not sick I'm more healthier than i've ever been at the moment before.

Noel

It's called post trauma amnesia and different people react to it in different ways. Because Luke
was unconscious for so long, 4.5 weeks, they had to keep him drugged because of his agitation. So
now what you see now is what you get.

Noel

Well you're getting there.

Luke

I need to get home to do some work... ...

Noel

We'll get you home shortly ...

Luke

Well you're not getting me home quick enough you have to work harder.

Noel

I'm working hard. When they're unconscious you almost think that they're going to wake up and say
"yeah let's get out of here." But it doesn't really, it just doesn't happen that way sort of thing.
That's just how it is.

If you happen to bang your head for any reason you'll do a lot of damage ..Your head can't

Luke

and you know what that's where you're wrong! Cos you listen to all these questions all these people
say and it goes straight to your head and it's wrong.

Chaplain Di

The patients who have come off their ventilators very often, they're full of medication coming down
from anaesthetics and are disoriented. And, and are on planet elsewhere, often.

Noel

If you think I'm wrong then

Luke

that's where noel goes wrong Noel doesn't know the logistics behind it he doesn't know how the
system works here he doesn't know how the nursing staff he doesn't know about any of that.

Noel

I might have spent the last 5 weeks seeing how the system works.

Luke

he hasn't spent any time in surgery.

Chaplain Di

Um...you know, they're-they're -- they are here for their son, loving him and - and supporting him
and willing him to-to get well and to be able to get on with his life and...that-that love that we
see, I think that's-that's the sacred source of-of being for all of us.

Titles

Four Days Later

Chaplain Di

We very rarely get to see patients after they leave ICU. You know most of our work is contained
down here, so the opportunity to say goodbye happens only once in a blue moon like that. So
patients leave and we don't know. ..Hello

Narration

Six weeks after he was admitted with a traumatic brain injury ...

Luke

Thank you. Thanks for all your help.

Narration

...Luke is walking out of royal north shore hospital.

Luke

I appreciated it. No I appreciate your help. You did a fantastic job.

Chaplain Di

Well actually you and your parents did a fantastic job.

Narration

It's a rare opportunity for Di to say goodbye.

Luke

The whole team in here' great. Great hospital

Chaplain Di

You're something.

Luke

I appreciate it all.

Noel

It's a happy day we're going home in the morning.

Chaplain Di

Well there's a sense of completion I suppose in that which often doesn't happen here Here's this
young man getting on with his life.

Luke

Good to get the memory back and get back to normal. Bit different to how I was 3 weeks ago....

Chaplain Di

Yes.

And to know what his parents have been through for 6 weeks or so, to hell and back a few times
yeah. It's really precious. Well we don't ever want to see you again

Luke

No.

Noel

We'll pop in in a month's time when we're back working.

Luke

It's the longest I've ever been in hospital and hopefully it's the last.

Chaplain Di

Yeah don't do this again.

Luke

No I won't.

Chaplain Di

All the best. OK.

Noel

Thanks guys.

We really thank you

Luke

All right See you later, appreciate it

Chaplain Di

All the best to you

Chaplain Di

So it's a treat. Good for the soul.

End Card

Sandra's artificial graft was successful. She now has plasma treatments every three weeks.

Luke returned to work part time and is still recovering from his injury.