Recently, Emma had started to think about getting more actively involved in the pro-assisted death movement in the UK. But her views were still in the minority, hence her slight secrecy about attending the conference. And in terms of her current practice, she’d more or less concluded that the best that she could aim for is enabling her sickest patients to get more involved in considering how and when they might die. She was also doing her best to keep her ability out of the way with such patients.
It was bitterly cold when Emma arrived at the vast conference centre and she decided to get a coffee in a nearby cafe before registration started. She walked in and noticed a pleasant looking, and similarly chilled, woman standing in the queue who resembled someone she’d met a year ago at another conference.
“Excuse me, you’re not Janna Roit, are you?” asked Emma.
“Well, yes,” said Janna. “And you are… I don’t believe it... Emma!”
“Yes, that’s me. It’s so good to see you. Are you here for the conference?”
“Yup. I’m trying to get my head around certain things and I’d hoped the conference would help.”
“Same thing here.”
“Are you still doing the same pain medicine job?”
“Yes. And you’re still in palliative care?”
“Yup, but we’re told the new term is ‘comfort care’.”
“So I see.”
They laughed and agreed to meet up again in the break for lunch.
The first session of the day was a debate entitled ‘Comfort Care or Cautious Care?’ and included a variety of pro-life and pro-assisted death speakers from across the spectrum of palliative and terminal care, and from different countries with vastly different legislation. Emma found the sanctimonious pro-lifers difficult to endure and almost walked out before the end. But just before the session concluded, a rather unprepossessing woman went up to the dais and started speaking. She calmly explained that she was the carer of a son with a thirty-year history of bipolar affective disorder. She went through a long list of all his hospitalisations, treatments, arrests, assaults, suicide attempts and side effects, and then put up a slide showing him how he was at the end of all this: a bloated, filthy balloon of a man with despair and frustration etched into his face. The stunned shock that went through the audience was palpable. She described the journey the two of them had taken to seek assisted suicide, which proved to be an endless succession of visits to different doctors in different clinics who all maintained that his condition was treatable. Finally, she made the decision to move the two of them to a tiny flat in Utrecht simply to facilitate his death. The two of them had finally met the residence requirements in November and her son had received the two independent assessments required. He now had a date for what the two of them had sought for so many years. The smile of relief that appeared on her face when describing this said it all.
Janna and Emma sat down in the café to have their lunch.
“That carer was quite something, wasn’t she?” said Janna.
“Amazing, absolutely amazing,” said Emma.
They sat in silence, eating their lunch and looking out across the city.
“You know, Janna, I think I’ve got my take home message.”
“Me, too,” said Janna.
December 2003
It was time for Emma’s annual appraisal and she was meeting up with the Witherington Hospital’s Medical Director, Dr Michael Martin. Appraisal was something introduced in the early 2000s in the wake of the Harold Shipman case. Emma never knew him personally, so she couldn’t vouch for his character or professionalism, but she had met other doctors who did know him and they had nothing but respect for him. So, apparently, did some of his patients. Unfortunately, at least 250 of them weren’t available for comment. Nonetheless, Emma thought that he’d probably have done rather well at his annual appraisal.
“Come in, Emma,” said Dr Martin, gently avuncular, with a pipe ready to smoke as soon as he was given a chance.
“Good to see you, Michael,” said Emma, “how’s the family?”
“Fine really,” said Michael, “apart from the usual angst with the kids and the pregnant gerbil.” They laughed. “Now, your appraisal. I’d imagine that there’s not much different from last year, but let’s go through it anyway. Where do you want to start?”
“Okay, starting with my personal details – you’ve got your copy in front of you – I’ve put where I work – that hasn’t changed of course – and the date of my full registration with the GMC – there’s a letter confirming that in my portfolio – and when I was appointed to this post, which was August 1994. Revalidation hasn’t come in yet of course, so I’ve left that bit blank, and I haven’t started moonlighting elsewhere.”
And so it went on: an hour of going through the form in quasi-forensic detail with variable seriousness. The marginally tricky bit that they came to 45 minutes in was ‘Probity and Health’. Probity is meant to be about moral principles of honesty, decency, integrity and so on. As far as Emma was concerned, she was honest with herself and with her patients, but often felt bogged down by the moral maze of stopping and starting treatment for her chronically ill patients. Health-wise, Emma had what one helpful cognitive neuroscientist called “emotionally unstable traits”, which she wouldn’t have any qualms about admitting. She might also have had a sub-clinical eating disorder, but she was hardly going to disclose that at her appraisal to someone she saw so infrequently. And there‘d been no overnight visits to Oxford in the last year either.
So, that was Emma’s appraisal. Year in, year out, she guided the discussion and omitted anything too sensitive. Bad doctors may be found out if there are complaints or bad audits; good doctors who occasionally transgress remain off the radar unless they are really stupid.
Dr Martin wouldn’t quite have reached the same conclusion. On the contrary, Dr Jones was very much on his radar.
December 2003, a few days later
A few days after Emma’s appraisal, and not long before Christmas, her mother was admitted to the local hospital in Guildford. Her father was spending much of the day by her bedside as he’d just retired. Although Emma and her mother rarely spoke these days, she drove down to visit her. This would prove to be one of the most difficult clinical situations she would have to deal with in her entire medical career.
Guildford General Hospital is a hotchpotch of new buildings, portacabins and a Victorian ex-sanatorium where patients with tuberculosis were incarcerated whether they liked it or not. During World War One, it generously took the sick and wounded. Emma’s mother was on one of the older wards, whose economical, Victorian design is pretty much standard wherever you go in the modern NHS unless the magic of private finance initiative has stepped in. She was, at least, in a single sex bay which was some small comfort.
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.