by David Ellis
Visiting a close relative in hospital when you’re also a doctor is a minefield and there’s no protocol to guide anyone. You can say you’re a doctor, show staff your badge, and ask to look in the notes; you can demand to speak to the consultant and refuse to take no for an answer; or you can simply be like any other visitor and passively wait your turn. Whichever approach you take, it’s not easy; Emma decided to go for the softer approach with the plan of notching up a gear if she didn’t get anywhere.
Emma’s father gave her the bare bones of the story in his typical no-nonsense way: “Your mother’s had a stroke. She couldn’t get out of the bed in the morning, her face was drooping to the right and she couldn’t speak. I called the ambulance. She hasn’t done a thing for herself since she was admitted.”
Emma looked at her mother: no longer the bustling interferer but a passive shell lying helpless in bed, with a drip and a urinary catheter to boot. Her face was still drooping and her right arm was lying lifeless on top of the bedclothes. She looked blankly ahead of her with little awareness of her surroundings.
“Hello, Mum,” said Emma, “How are you doing?”
No answer.
It was clear that she wasn’t doing much at all. Emma grasped her mother’s hand and gently raised it, but just felt limpness. Her mother barely showed a flicker of reaction.
“I’ll be back,” said Emma. She took her father to one side away from her mother’s bed.
“It doesn’t look good, does it, Dad? I think she’s had a dense stroke. What have the medical team said?”
“They haven’t said much really. It’s just a question of waiting and seeing, they said.”
That’s my father sounding far more passive and un-medical than usual, Emma thought. He returned to Mum’s bedside and Emma decided to seek out someone who might know what was going on.
Emma found a young, harassed, doctor – in his first house officer post according to his badge – on the phone to someone who was obviously giving him a hard time: “Look, we need the scan today; it can’t wait and it really is urgent. My consultant will kill me if it isn’t done. Okay, thanks.” Emma remembered what it felt like. She hovered, waiting until he was off the phone.
“Hi,” said Emma, “sorry to disturb you but I’m Mrs Jones’s daughter and I’d like to talk to someone about her.”
He turned briefly from the form he was completing. “Sorry, but I can’t help, she isn’t my patient, try asking the staff nurse over there.” He pointed at someone helping herself from a box of chocolates.
The serial chocolate eater wasn’t much more help, but between celebrating the Cadbury Celebrations, she suggested ringing the senior registrar in the clinic and allowed Emma to use the phone on the desk.
“Hello,” said Emma, “is that the Dr Spencer who’s looking after Mrs Jones on Armstrong Ward?”
“Yes,” he said. “How can I help?”
“Hi, it’s Emma Jones,” she said. “I’m Mrs Jones’s daughter and I’d really appreciate an update on how she’s doing. I’m a doctor, by the way.”
“Oh, hi, Dr Jones,” he said. “Actually, it’s a bit difficult to talk as I’ve got a patient with me. Can I call you back in ten on that number?”
Emma waited ten, twenty, thirty minutes and then gave up.
She returned to her mother’s bedside. Dad was looking more dejected than ever. “You know what, Dad, I think the best thing is for you to go and have a cup of tea in the canteen and I’ll wait with Mum to see whether someone from the team turns up.” He went off, leaving Emma by the bedside.
Even without talking with a member of the medical team, Emma could see how bleak the future was for her; dense strokes like this simply don’t improve overnight and the chances were that she’d need long-term, very expensive care. And that would be to sustain a fairly appalling quality of life.
From Emma’s point of view, there was a complicated conflict of interest that she didn’t really want to have to deal with. On the one hand, her mother was an individual who was her flesh and blood, whom she should love, but actually didn’t. On the other hand, there was the traditional physician side of Emma who wanted to see her mother properly treated, but also the more palliative care doctor who didn’t want to see her suffering prolonged and any last vestige of dignity destroyed by the medical system. No easy answer, in other words.
But better to be forewarned. So Emma decided to very cautiously use her ability to see what feelings she could get from her mother. She wasn’t sure what she expected but thought that it would probably be passivity or anger, as these were the usual emotional opposites that her mother had displayed and she’d experienced when she was growing up.
What Emma actually experienced then totally threw her. It wasn’t passivity and it wasn’t anger. In fact, what washed over Emma was this extraordinary feeling of peace and contentment, almost as if her mother didn’t have the slightest care in the world. So absolutely no hint of the ‘locked in syndrome’ that can sometimes happen with stroke patients, and instead an acceptance of her lot.
Phew, Emma thought. She drew back the curtains and went in search of a nurse.
“Hi, it’s me, Emma Jones, Mrs Jones’s daughter. I tried getting hold of Dr Spencer but he didn’t ring back. I’m wondering whether there’s a ward round tomorrow that I might join to discuss my mother?”
“Well, the doctors don’t normally like relatives to visit during ward rounds,” said the nurse, “but as you’re a doctor I don’t see why not. The ward round usually starts at 2 and goes on until 5, so you could either come at the beginning or the end.”
“Okay, thanks, I’ll be there for 2,” said Emma.
Emma went back downstairs to find her father in the canteen. He seemed relieved that she’d made some slight progress in meeting up with the medical team.
“But, Dad,” said Emma, “I think you need to be prepared for the worst.”
So, the following afternoon, and after rearranging patients with her very patient secretary, Emma arrived for the ward round.
There was a gaggle of medical students in front of the seminar room and a gaggle of them in the seminar room. Emma briefly wondered whether she was interrupting a teaching session, but then a voice called out: “Dr Jones, I presume?” Emma waved a hand in the direction of the voice and sat to a young looking man in a suit who introduced himself as Dr Mark Turner, the acute medicine consultant. By this time, the students had de-gaggled and there were just a handful of people in the room, which relieved her. Displaying anything in front of medical students didn’t come easy to her, and some emotions were definitely not for public consumption. Dr Turner introduced the rest of the team one by one, which included one of the nurses from Emma’s visit yesterday plus the senior registrar who never called her back.
“I gather that you’re a medical doctor, is that correct?” asked Dr Turner.
“Yes, I’m a consultant in pain medicine. And my father – Mum’s husband – is a GP, but you probably knew that,” said Emma.
“Yes, I believe we did. It must be difficult for him – and for you, I’m sure,” said Dr Turner.
“Thanks. And yes, I don’t think either of us is finding it easy,” said Emma.
“Let’s review Mrs Jones’s history and then put our heads together. Dr Spencer, would you present the history?” asked Dr Turner, turning to his senior registrar.
“Okay, Mrs Jones is a 65-year-old woman who was admitted the day before yesterday following acute onset of right-sided weakness and loss of speech. CT brain on admission showed extensive ischaemic changes in the left temporo-parietal region – you can see that here (he pointed at the scan on the projected screen) – and her GCS remains at approximately eight, although it’s difficult to be precise as, unusually, her eyes remain open constantly. BP was 180 over 130 on admission, now down to 140 over 110. She remains apyrexial. Routine investigations have come back normal so far. She’s shown no indication of purposeful movement on the unaffected side and she remains on I
V fluids.”
“Thank you, Simon,” said Dr Turner. “And she poses us quite a problem really. Although her autonomic function appears unaffected, her general unresponsiveness and inability to drink or eat will pose huge problems for her future management. Of course, she may improve over the next few days, but given the acuteness of the stroke, her age and the extent of the ischaemia, I’m not so sure. We could be talking about PEG feeding, really." He paused and looked at Emma. "Dr Jones, I gather you spent some time with your mother yesterday. What are your thoughts?”
“Well, as you’ll appreciate, this is hugely difficult for me. I’m trying to be detached but I’m not doing very well.” Emma sniffed and looked in her bag for some tissues. “But to be absolutely honest, I’m just not sure that my mother would want anything heroic to be done to prolong her life. It’s going to sound strange, but when I spent time with her yesterday, I just got this impression that she was finally at peace with herself and no longer had any care in the world. I know that sounds hopelessly un-medical, but that’s the impression I got.”
“So, Dr Jones, you’re saying that her unresponsiveness and inability to do anything for herself could be of her own volition?” asked Dr Turner.
“Yes, I suppose that is what I’m saying, although it’s terribly difficult to say that about your own mother,” said Emma, dabbing at her eyes with a tissue.
“Hmm, I wonder where we should go from here,” mused Dr Turner.
“Would an EEG be worth considering?” asked Dr Spencer.
“Possibly,” said Dr Turner He turned to Emma. “As you probably know, Dr Jones, it’s sometimes helpful to monitor brain activity with continuous EEG after a stroke, and it might give us a better idea of what direction to take. Would you be agreeable to us trying that?”
“Yes, it’s worth a shot,” said Emma. “Is it okay if I give you a ring later in the week to check on her progress? And thanks so much for looking after her.”
Emma left the ward round with a mixture of reassurance that her mother was receiving good medical care and trepidation that she might have overstepped the mark. She phoned Dr Turner a few days later to find out the results of the EEG monitoring. The news was that her mother’s brain showed increasing slow waves, which are generally indicative of the brain simply not functioning properly.
Emma phoned her father.
“Dad, Emma here. It’s not good news really. Mum had the EEG and this showed that there are more and more slow waves, which suggests that her brain isn’t functioning well. And she’s still not responding or eating or drinking. What do you think we should do?”
“I don’t know, Emma, I really don’t know. I just feel so helpless. It all seems so out of my hands.”
“I know, Dad. I feel the same as you really, but we need to help them make a decision.”
“You mean between continuing treatment and letting her go?”
“That’s the nub of it, Dad.”
“What do you really think, Emma?”
“I think we should let her go. Her life’s been hard enough without her ending up in a nursing home on a feed and so on.”
“Oh, god, Emma, I really don’t know how I’ll cope.”
“I think you’ll cope, Dad; you always have. And I’ll always be there for you.”
But saying that to her father was very difficult and part of her simply wanted to walk away.
Emma phoned Dr Turner and explained that the two of them had reached a conclusion about her care; Dr Turner agreed with Emma’s proposal.
Emma’s mother passed away a week later.
December 2003, two weeks later
The congregation briefly assembled outside the church in the snow and then went in, where it seemed even colder. Her mother’s coffin was in a nice oak with brass fittings and there was a picture of her in a silver frame on top. Emma couldn’t remember when the photo was taken but it was a good photo and showed her looking unusually relaxed and happy. Her father had noticeably aged since she last saw him in the hospital canteen. Emma didn’t recognise most of the rest of the congregation but she guessed that there must be a smattering of distant relatives plus various village folk. Emma tried to avoid looking at her grandparents who, despite their considerable age, were sitting upright in their pew seats and seemed to be avoiding making eye contact with anyone.
Unlike her mother who would always memorise and rehearse anything she had to say in public, Emma had decided to deliver her eulogy entirely off the cuff. Risky perhaps, but it couldn't be worse than making a fool of herself in front of 100 fellow medical students. So, her turn in the service arrived, and she walked up to the lectern.
"Looking at that photo of Mum as we walked in, the thought struck me that I'd never seen her looking so relaxed or happy. The sad thing is that I can't recall when it was taken. I think it's true to say that Mum's life wasn't easy. She once described being a GP's wife as like swimming around in a goldfish bowl with everyone staring in. Despite assiduously watching all of Fanny Craddock's TV shows, she was a dreadful cook and Cadbury's Smash couldn't come soon enough. But one abiding memory I have of her is how she stood up for me when she was summoned on many occasions to account for my rebellious behaviour at primary school. I believed in Darwin but the nuns didn't. Mum died suddenly, but I think she'd made up her mind when her end should come, and I'm pleased that she finally showed the independence of spirit that had lain suppressed in her for so long.”
Emma stepped down and made a point of looking directly at her grandparents; they were still avoiding eye contact. She hated them for what they did to her mother.
Emma felt that she was on autopilot for the burial. She knew few of the people standing by the graveside and, even when they hugged her, shook her hands or congratulated her on her eulogy, she didn’t really know how to respond apart from saying a bland ‘thank you’.
As she turned around to leave the graveside, she noticed an older woman wearing sunglasses standing back from everyone else as if she didn’t belong there. Emma walked towards her and realised that the woman was Dr Ziegler, a consultant that she’d worked for about ten years ago.
“Dr Ziegler?” said Emma. “Is it really you?”
“Yes, Emma,” said Dr Ziegler, “but we can’t talk now. Ring this number.”
Dr Ziegler handed Emma a bit of paper with a phone number on it and walked away to the graveyard entrance, glancing around as if she was trying to avoid being seen.
Emma phoned Dr Ziegler later that afternoon. She still sounded stressed and suggested meeting the following day for lunch. She seemed reluctant to say much on the phone.
December 2003, one day later
Emma didn’t sleep much that night. What with Dr Ziegler’s furtive appearance at the funeral and the urgent lunchtime assignation, it was all sounding like some clandestine operation that she ought to avoid. Thankfully, when Emma did arrive at the café opposite the hospital at 1:00 p.m., Dr Ziegler was no longer wearing sunglasses and looked relatively normal, albeit somewhat stressed. The café was in full swing for Christmas, with carols playing and staff dressed in Father Christmas hats, so Emma could understand why Dr Ziegler chose it for their meeting.
“Hi, Dr Ziegler,” said Emma.
“Hello, Emma,” said Dr Ziegler, “and please call me Elizabeth. I was very sorry to hear about your mother, and I’m sorry I was loitering in the graveyard, but I needed to speak with you.”
“Thanks, it’s been difficult, and particularly for my father.” said Emma.
“Look we may not have much time, so I need to tell you something important.” said Elizabeth.
“Okay,” said Emma, not really understanding what all this was about.
“Emma, as you may have realised, we share an unusual ability, although yours goes way beyond mine. There’s a group of individuals somewhere in the UK who have an interest in us in case we might be useful to them. Their interest in you started with the dead vicar. I was contacted by one of them – someone called Brimstone – b
efore you started your SHO job and I was asked to mentor you. That was all they told me. When I saw you on the ward round, I realised that your ability was special. Unfortunately, an unusual ability like ours isn’t something that can be taught in a school like Hogwarts, and instead it has to be allowed to develop over time without too much outside interference. Is this making sense so far?”
“Yes, I think I understand,” said Emma. “I did a bit of research on what I thought my ability might be and came across references to the evil eye, if that’s what you’re talking about.”
“Broadly speaking, yes, although we believe that there’s more of a spectrum of effects; for instance my ability is entirely benign, whereas it would appear that yours might be more adaptable and could be something rather special.”
“That makes sense. For a time I felt like Medusa, although I think I understand it better now and have more control. You know that I took part in some functional MRI scanning, don’t you?”
“Yes, I did hear about that, and that’s why I’m concerned for you. I think you’re in danger, Emma. I think there may be some people who want to capitalise on your ability and others who might even want to destroy your ability.”
“That’s got me worried. So what should I do?”
“I’d suggest keeping a low profile for the time being. Concentrate on your medical career. Use your ability cautiously and try to avoid doing anything that might attract attention. You can always contact me again on the number I gave you.”
“Thanks, Dr Ziegler. I've got a lot to think about over Christmas.”
January 2004
Now that Christmas was over, Emma decided to take the bull by the horns and broach the subject of assisted death with a group of SHOs whom Emma was due to see anyway as part of the medical education programme. She’d already received an e-mail from the Witherington Hospital’s medical education department letting her know in their usual officious way that all the seminars in this year’s programme were now being videoed to sell to subscribers; and for a hefty price too, she imagined.
