Thursday, September 03, 2009

difficult questions

‘Listen. I’ve lived here all my life. I was born here, about a thousand years ago, I should think. Hrmph! So if anyone’s heard of The Old Coach House, I’ve heard of it.’ He frowns. ‘And I’ve certainly never heard of it.’ He grips with both hands on to Ellen’s open window as if he’s tethering the basket of a runaway balloon. He blinks, heavily, and it seems to carry on into a little sleep. Ellen touches him on the arm and he opens his eyes again with a start.
‘Okay? So there you are. Good. I don’t believe it exists, sir. Madam - of course.’
He releases his grip and tries to stay upright.
‘So I suggest you get straight on to Mission Control and check your facts. Good luck.’
He takes a catastrophic step backwards that almost puts him in a hedge, recovers himself, and waves us on. I expect to see him saluting in the rear view mirror.

I drive out of the lane and pull over at the top whilst Ellen calls Control to get a better fix. It’s only then that we see the painted white sign: The Old Coach House, on an opened wooden gate between two high flint walls. Ellen hits at scene and we jump out.

A moment later we’re waiting at the door with all our bags.
A figure appears behind the frosted glass.
‘Just a moment,’ she says, struggling with a top bolt and then turning the lock. The door swings open and an elderly woman stands there, dressed in a heavy brown tweed skirt and jacket, looking so much a part of the house you would think she was struck from the quarry along with the weathered old stones of the walls.
‘Thank you for coming so quickly,’ she says. ‘My eldest daughter Karen’s upstairs. She’s fallen out of bed and I can’t get her up.’
She shows us through the house and up the stairs.
‘I’m afraid my poor darling has cancer very badly. She was discharged from hospital a couple of weeks ago to spend her last days at home, and she seems to have taken rather a turn for the worse.’
‘What’s your name?’
‘Edie. My other daughter is on her way over, but she’s had to come quite some distance.’
‘And how old is Karen?’
‘She’ll be fifty-eight in October.’
Edie stands aside at the entrance to a bedroom simply furnished with two single beds, and waves us in.
There is a woman on the floor, lying on her side between the beds, her knees drawn up, with some of the bedclothes dragged down over herself.
‘Karen – it’s the ambulance.’
She groans. Her legs poke out from under the bedclothes with the waxy white skin tones of a mannequin. There is a dreadful metallic smack beneath the otherwise soft herbal scents of the room. When we get closer we see that Karen has vomited copiously, a quantity of foul, black blood that sticks her hair to her face, stains her mouth, nose and chin, and pools out around her on the carpet. Her lips are drawn back from her teeth, and she stares up at us with eyes so round and deep and lightless it’s like looking through a window onto the abyss. She grabs my arm and tries to talk.
‘I’m dying,’ she gasps. ‘Let me die.’
‘Just hold still, Karen.’
Ellen chucks me a towel and I wipe her mouth and face clear. She clutches on to me, her breath coming in spasmodic gasps
‘Karen’s extremely ill,’ I tell Edie. ‘We need to get her to hospital right away.’
‘Oh no, please don’t take my darling away. If she’s dying I want her to die here with me. That’s what she wants. Please don’t take her.’
Ellen passes me an oxygen mask and I put it around Karen’s face.
‘I have to ask you some difficult questions,’ I say to Edie. She sits down on a low wicker stool.
‘Does Karen have a DNAR in place?’
‘What’s that?’
‘A DNAR – Do Not Attempt Resuscitation.’
‘I don’t know what that is. These are her notes.’
She hands Ellen a file.
‘District Nurse, Doctor, discharge home,’ says Ellen, rifling quickly through the file, trying to make sense of the information there. ‘Can’t find a DNAR – but there’s a section here: Karen understands the extent of her condition and wants to spend her remaining days at home with her mother.
Whilst Ellen is reading this out, Karen stops breathing. I feel for a pulse at her neck.
‘She’s arrested,’ I say, then give her a quick thump in the chest. Ellen hands the file back to Edie, comes over to pull the bedclothes away and to cut off Karen’s nightdress whilst I compress her chest.
‘Oh, please, don’t,’ says Edie.
At once Karen is groaning again. Even before Ellen manages to put the defib pads on, she has a pulse and is breathing. I push the hair back from her face. She claws feebly at the oxygen mask, trying to pull it away.
‘Please, don’t do anything more,’ Edie says.
Ellen and I both know that without a DNAR we should make all due effort. We should be making ready to get Karen out to the ambulance, stabilising her as best we can, putting in an ASHICE to the hospital, the scenario playing itself out before us with wretched inevitability.

We have to make a decision.

The progress of her cancer is plain to see. This is a warm and loving environment. Far better to die here with her mother by her side than on a brightly lit resus trolley.

‘What do you think, Ellen? Shall we make Karen comfortable?’ I say.

We arrange things so she can rest comfortably against the bed, surrounding her with cushions and rolled up duvets. We unplug the defib, and then cover her up with soft blankets from the other bed. Edie gives us a box of tissues and a wet flannel so we can clean her face. Ellen brings the wicker stool over so Edie can sit next to Karen and hold her hand. She strokes it and presses it to her cheek.
‘This is all wrong,’ she says. ‘It should be me. It should be me. My poor darling.’
Karen seems calmer. Her breath comes in short, periodic gasps. Her head relaxes backwards and Edie strokes her forehead.

We have no way of knowing how long it may take for Karen to die. I phone Control to ask for an out of hours doctor, an ECP or paramedic practitioner to attend, but there are none available. The Dispatcher tells me he’ll get a senior manager to ring back to talk over aspects of the job as soon as possible. By the time the phone rings a few minutes later, Karen has stopped breathing again.
‘Has she gone?’ says Edie. ‘She’s gone, hasn’t she?’
Ellen checks for a pulse. After a few moments she shakes her head.
‘I’m afraid so.’
‘My poor, poor darling.’
‘Are you there?’ the manager says on the phone.
‘Sorry. It’s academic now.’ I tell him.
He says he’s logged everything. He understands the predicament, is sympathetic, says he might well have done the same.
I ring off, then contact the police number for a death at home.

I tell Edie that we’ll put Karen back to bed.
‘Would you like some tea?’ Edie says.
‘That would be great.’
I help her down the stairs, then go out to the vehicle to fetch the scoop stretcher.
‘Don’t worry,’ I say to Edie in the hallway. ‘It’s just something to help us lift Karen off the floor.’

The other daughter arrives whilst we’re finishing the paperwork in a spare room. We hear her crying along the hallway.

Later, she comes into the room and shakes our hands. She says she would’ve punched me had I carried on down the other route. She smiles when she sees the cup of tea Edie made us, asks us if we’d like another.

When the police arrive Ellen and I have to give statements. Without a DNAR this is not a straightforward death at home. We’re asked to hang on for a senior officer to come over from the station. We tell him we’ll be waiting outside in the ambulance.

We say goodbye to Edie and her daughter, and take the last of our bags out with us.

The evening has deepened into night. We sit in the cab, and wait, with only the occasional passing car and the moon to light us by.


Gerry said...

Thank you. Just . . . thank you. Keep writing.

Anonymous said...

Well done for making the best decision for your patient

Anonymous said...

Good call, depending on my crew mate I would have done the same. Taking someone who is terminally ill away from their family doesn't help anyone.

I wish it was easier for crews to make these decisions, I know a lot of people who would have started resus if no DNR was in place.

Anonymous said...

Bless you for caring and acting as you did.

Anonymous said...

It is good to see someone do the right thing in spite of the rules.

Spence Kennedy said...

Thanks very much for all your comments and support.

It was far and away the most difficult job I've dealt with so far. I've been to a few traumatic scenes, one reason or another, but when we sat back out in the ambulance I felt completely wrung out.

Edie was wonderful. I have absolutely no doubt she would've changed places with her daughter, horrible though her predicament was. It was a tragic scene, but the power of their love for each other was incredible, inspirational.

It was something of a privilege to be there and help out in whatever little practical way we could.

I've yet to hear whether we'll have to face any disciplinary over the breach of protocol. In my own mind I was happy we'd done the right thing (but I was relieved when the other daughter said she'd have punched me if we'd tried harder with the resus).

There's such a gap between the theory and the practice, one that's particularly difficult to close in the heat of the moment. I suppose the best you can do is try to see as clearly as possible what's in the interest of the patient, and hope everything else works out from that.

I'll let you know if I hear any more.

Rach said...

Once again thanks for your wonderful writing I was in the cottage with you.

Awful decision to make but I so agree with her wanting to be at home and not dying on a resus trolley surrounded by drunks.

I hope common sense prevails all round for you both..xx

loveinvienna said...

What a shame, the poor poor woman. I'm pleased you let her die peacefully at home (as are you, I think), but I think we all would have understood if you'd scooped and run. Luckily the family were on your side.

Cancer is just horrible, we have a fair few with it at the Care Home. Lost one to liver cancer last week, he was a DNAR. Had him on a Syringe driver at the end (is that the right name for it?). It was very sad, we all cried when the Night shift passed on that he had gone. But his family were there :)

Thank you again for the work you do.
Liv xxx

uphilldowndale said...

Thank you, life and death doesn't come with a script

Petrolhead said...

You did absolutely the right thing, and I'm glad Control recognised that too. There's surely nothing worse than knowing that somebody is going to die anyway, regardless of where they are, but the rules state that unless a signature is on a specific document that place is going to be an undignified reciscitation room in an A&E department surrounded by strangers.

Good call, Spence and Ellen.

lulu's missives said...

You and Ellen were amazing and respectful.
My father died at home of cancer, it was what he wanted. Given the same choice it's what I would want too.
So thank you.

Baglady said...

Beautiful and thought provoking. Thanks for sharing.

Spence Kennedy said...

Thanks again for your comments and support.

I think it's still true in this case that in spite of Edie's protestations (and in spite of what Karen said - bearing in mind she was almost certainly cerebrally hypoxic and in no state to make a rational decision), and despite the tenor of the notes in the care folder, strictly speaking we should've gone ahead with the resus. I have to say I'm still very glad we changed tack and simply made Karen comfortable, but it's a bit of a worry. I suppose it'll depend on the view the coroner takes...

:/ x

Kaz said...

You moved me to tears yet again Spence. Glad there are people like you out there.

Schooner said...

Such a moving story. Thank you Spence and Ellen for the courage and compassion to make the right decision despite the potential consequences for yourselves. XX

Anonymous said...

currently sat here in tears. You certainly did the right thing in my eyes. Im a student nurse, and spent today studying up on DNRs, so what a coincidence to come on here and read this.

You may be worried about whether you stuck to protocol and what the domino effects of your actions will be for you; but for the family that you helped, they will never forget you and will always be eternally grateful for letting their daughter die with her family at home like she wanted to.

Please continue writing - your fabulous.

cogidubnus said...

Thank you Spence...

A very courageous decision and undoubtedly the correct one...I am deeply impressed at the obvious rapport between yourself and Ellen too...

Thank you again...

Anonymous said...

You did the right thing. What a sad but oddly uplifting story. I do hope the coroner will take Karen's and the family's wishes into consideration before making a decision. What a tough situation. Best to you, Spence.

Spence Kennedy said...

Thanks again for your comments.

I think one of the most frustrating aspects of ambulance work are those times when you're 'parachuted' into quite complex care scenarios with only the minimum of information, expected to come up with the right solution, often very quickly. I suppose that some would say that's where protocols really come into their own - you don't actually have to think, you just follow the rules, and if you do that you won't make a mistake. But life's not simple, and protocols aren't always the right thing to do.

I have no idea why a DNAR wasn't in place for Karen. Maybe we'll find out soon...

I really appreciate all your support. It means such a lot.

:0) xx

Anonymous said...

I havent read everyones comments but i wanted to thank you for allowing her to go peacfully at home the way she wanted to. I can only hope that if i ever find myself in that awful situation someone like you will be there to let me go with dignity.

Spence Kennedy said...

Thanks Anon. x

Anonymous said...

I'd have done the same Spence.

Sometimes you have to do right by the patient and their family then think about the impact on our protocols later.

Sounds like you have the backing of control and the family so hopefully nothing will come of it.

Michael Morse said...

Well done, Spence. I would have done the same.

Anonymous said...

well done, the right move without question
but i am appalled that a DNR was not in place for you. what a ridiculous situation to find yourself in and moreso what a disappointing lack of pallative care. The fact that her mother didn't understand what a DNAR is seems to imply that nobody had discussed (or more importantly documented) this important but difficult area of care with the patient and her family. Its pretty poor form in pallative or terminal patients not to take the time and actually find out what there wishes are. afterall there is no real surprise that they are going to die, so there is no excuse to not have these things in place. you would think that surely someone - the gp or hospital docs could have formalised this 'little' detail and saved you and of course the patient from such a distressing situation.

aussie bush doc

Spence Kennedy said...

Thanks Aussie Bush Doc

It's terrible being parachuted into these complex situations and having to make the best decision you can.

As I remember it, we formed the impression that any meaningful talk of DNAR etc had been put off - by the patient - until her medication had been properly sorted out (some problem with the right grade of patches). It looked like her deterioration had been much more acute than anyone - including the patient - had expected, so maybe that's why nothing more substantial was in place. I don't know this for sure, though - we didn't hear anything more.

Palliative care still has some way to go in this country. I've only been frontline for 3 years, but in that time I've been called out to quite a few situations where the relatives/carers seemed unclear about what to do when things took a turn for the worse. Very frustrating and unsatisfactory for all concerned!

Thanks v much for your comment. Hope yr well ;)

Anonymous said...

Thank you for doing this.

My granny died last monday. Her funeral is tomorrow. In August she had something happen that everyone thought was to be the end- and although it had been decided that the home would just make her comfortable, paramedics did attend, and they decided NOT to take her to hospital as resus wouldn't be in her best interest if it came to that. I am certain she wouldn't have survived the trip to hospital and so in fact we had her for 2 more months.

In the event, she died peacefully, not in pain, from bronchial pneumonia, in her nursing home. I am a midwife and I am so glad that she died like that and not following aggressive resus, knowing what that entails. Sometimes it is kinder just to do nothing.


Spence Kennedy said...

So sorry to hear about your Granny, Anon. It sounds as if she was in a good home and had excellent care, though.

There is still such a grey margin around the margins of end-of-life care. DNAR and living will/directives don't quite cover it. Plenty of relatives still don't seem to know what to expect or what to do when the end comes. I wonder if more could be done to set the patient up at home with contingency plans in place to cope with the inevitable.

Of course it is terribly difficult for crews called out to these situations. They always have the best interests of the patient at heart, but there's often precious little time for those critical decisions. Common sense should be enough, but at the back of your mind you're aware that common sense does not carry much weight in a coroner's court.

Thanks for your support, Anon. It means a lot.

BTW - Sorry for the delay in replying. We've been away on a half-term holiday this past week - to the Suffolk coast. Beautiful! I didn't want to come back... ;0) xx