When Alicia was tiny, her mother maintains she was normal in her development, but I have my doubts. They have pictures of her as a two-year-old, sitting propped up on her father’s lap, looking up into the camera, smiling. Or perhaps it was simply a grimace, a reflex from that tiny shock of the light of the sun touching her face. The smile she wears in these photos is not so different from the one she has now, 15 years later: whenever a new person comes into her room; when her long hair is brushed until it shines or the soft toys which surround her are rearranged; when she is dressed in her favourite primrose yellow pyjamas – or even when she is subjected to blood tests, or has her catheter changed. But when she smiles, her mother and her carers smile back and make a fuss of her: they say that Alicia likes it when her sheets are straightened, or the curtain is drawn back to welcome the new day. It seems that Alicia welcomes her mother, or her brother, or the doctor, or the lady that cleans her room, because she smiles whenever anyone comes in. They say that Alicia is brave: and it’s true, that every day she greets every new indignity with the same smile.
Alicia had problems, it seems, pretty much from birth. I didn’t know her then, but I know her well now, and on a number of occasions I have had to excavate deeply into her medical records and, without particularly intending to, have built up a strong impression of the events of those years. The pregnancy and birth were uncomplicated, but she had been slow to feed. She didn’t seem to latch on or swallow well. Her mother, a determined, embattled woman, had wanted to breastfeed, but eventually, with the encouragement of a worried health visitor, had switched to artificial feeds. Alicia’s mum felt guilty. The process of giving birth, of breastfeeding, of nurturing her baby was important to her, and she blamed the neonatal medical team for undermining her.
Alicia gained weight, but slowly. Her swallowing troubles worsened, she vomited constantly, and seemed to be inhaling her feeds. She had a significant episode of pneumonia when she was six months old. Just after her second birthday, her mother expressed concern that she wasn’t supporting her own weight. Alicia babbled, but she seemed to lack words. Her mother started to interpret for her, turning her vocalisations, which seemed to lack structure or intention, into words and sentences, then whole emotional narratives.
Alicia had always smiled; she had always had a cheery nature. She smiled at everything. Alicia’s most resilient characteristic was always this – this brightness in her soul.
When she was 30 months old, she started having fits. It had seemed to take days to get her convulsions properly under control. According to her mother, it was then that her developmental problems had begun. I know, in fact, that this isn’t the case. Her medical records clearly indicate that her parents had been concerned by her lack of developmental ‘milestones’ well before her first major episode. Indeed there is evidence of concern that she had been having minor convulsions for months before her first admission, but something about Alicia’s mother makes it impossible to challenge. It would seem as if I were being heartless, or, in some way, disloyal.
Her father, a university professor, left the parental home when Alicia was eight, and is now a distant, if caring, presence. Her mother is highly protective of a certain chronological view of her daughter’s problems. ‘Until this happened, Alicia could do…’ whatever … but now she can’t.
It is a narrative unflattering towards the medical profession, who have always been one step behind Alicia and her problems – late in diagnosis, late in reacting to change, insistent on immunisations, medications and treatments that have only brought complications, side effects and harm, and always slow to accept responsibility or blame. Alicia’s mother has interposed herself between Alicia and a dangerous and indifferent world. Alicia’s mother can be suspicious, highly protective, even hostile. Around her, you tread gently.
Every month I take blood from Alicia. This is part of a negotiation, between the hospital, her parents, and me. Alicia is fed via a jejunostomy tube, a tube fed through her abdominal wall directly into her gut. She is fed overnight, and has been for many years, because she no longer swallows reliably at all. She is susceptible to deficiencies in vitamins and micro-nutrients which have to be watched for diligently. Her convulsions are suppressed by a cocktail of anti-convulsants which tend to conflict with her other medications and these conflicts are exacerbated by her diminished kidney function, so blood levels of these have to be regularly monitored. There is suspicion that Alicia’s mother feeds her vitamin and mineral supplements of unknown provenance via her jejunostomy, at night, when no one can see, and that these unknown factors might destabilise Alicia’s drug and metabolic balance further. I have become something of an expert in getting blood from Alicia, although it’s a job I dread.
She sits up in bed. Her curtains are open spilling light into the room. Her long, flaxen hair is spread out on the pillow around her. There is a poster of the cast from Friends on the wall facing her. Ross is deemed her favourite. There is another separate poster of Ross, with his glossy black hair and his vulnerable puppy smile. Her mother, always there for her, is tying a pale blue ribbon in her hair. Every morning Alicia’s mother fixes her daughter’s hair. In recent years she has tried a little make-up, and today there is a hint of lilac eyeshadow, which I notice is the same as her mother’s.
Alicia’s skin is thin and almost translucent. She has tiny, spidery veins which seem to float just under the skin. I say, ‘Hello, Alicia, how are you?’ and Alicia smiles and vocalises. In the crook of her left elbow is her current favourite soft toy, a little dog. Her mother answers on her daughter’s behalf. ‘Hello, Doctor, we’re fine!’ And I remove from my bag the fine butterfly needle, blood bottles and tourniquet, and Alicia gazes up at the ceiling, which she always does, whatever else is happening, whoever else is in the room.
‘What’s it today then, Doctor?’ asks Alicia’s mother, smiling brightly, and I say, ‘Usual! Kidney, liver, drug levels, blood counts…’ and her mother, as she has for years, writes down my answers in a spiral bound book, ‘Alicia’s Medical Diary’, which she keeps always ready on a cabinet by her bed.
Her mother clasps Alicia’s other hand tightly, whispers urgently and reassuringly into her daughter’s ear, and winces when I slip the needle in, as if it is her skin that I am piercing and not her daughter’s. Alicia smiles at the roof. Most times I get the blood sample without too much problem, but sometimes not. Sometimes a bloom of blood spreads around the vein which I have just burst, and I withdraw the needle and press firmly. Nowadays I never try more than once. In the past I would become increasingly agitated as I tried a second or third time with diminishing hope of success, my mood in tune with Alicia’s mother’s, who would mutter wordlessly, her hands growing white and bloodless as she squeezed her daughter’s.
‘Well done, Alicia!’ I chirp, whether I have succeeded or failed, pressing cotton wool to the wound. ‘You’re brave!’ Alicia’s eyes are half closed; she is dozing now, gone from the world, although the smile remains, flickering on and off.
‘Thank you, Doctor,’ says her mother, gazing into her daughter’s face, moving a lock of Alicia’s hair from her forehead.
My heart is like a stone in my chest after I have seen Alicia. I always feel angry. I don’t really know who I am treating, or why. I don’t think that it can be Alicia, because I don’t think that Alicia knows, or cares, one way or another. During the long years when her paediatricians tried to make a precise diagnosis for Alicia, brain imaging certainly seemed to suggest abnormalities so profound that they cast doubt on Alicia’s capacity to have any higher brain function at all. I don’t know for sure whether she feels pain, or distress – I have never seen evidence of it – but her mother certainly maintains that she does, and it’s safer, surely, to proceed on the assumption that her mother is right; but simply avoiding pain and distress doesn’t justify a fraction of the medical interventions that have been performed to keep Alicia as she is.
I think, in fact, that I’m probably treating her mother. Or perhaps the team of carers who help her mother, who collude, brilliantly, compassionately, wholeheartedly, in the theatre of personhood that is performed around their patient. Perhaps I am simply doing what I’m told by her hospital consultants and a medical system that is invested in maintaining Alicia as she is. But every time anyone perpetrates even the tiniest discomfort upon Alicia, it is done to benefit someone else, and I wonder, has anyone even thought about that? And whose job would it be anyway to think about it?
The truth is I don’t even know whether there is a person in there to treat.
On a good day, I am successful and have three blood bottles to send off. My visit to Alicia has taken 15 minutes or so and I get back to my office quickly. I always have more stuff to do. Still a little angry with the world, I sign a death certificate, mandating the burning of the body of a man I knew slightly, who died, peacefully, at home. I take the greatest care over this, even though my patient is dead. Caring about dead people is important. I don’t really know why, but it is. If you mess up a death certificate, it delays funerals, can demolish crematoria, leads to unnecessary autopsies and angry conversations with coroners and fiscals. It causes enormous pain to so many. Mangled death certificates have caused me sleepless nights, and today I am angry and out of sorts, and prone to error.
I speak with the daughter of an elderly woman with dementia in a nursing home whom I am treating for pneumonia. Mrs Sturgess is likely to die tonight. Both her daughter, Rita, and I have agreed to ‘keep her comfortable’ this time, but I still want to check in with her, make sure that Rita is still happy with this: no more admissions, no more antibiotics, no more unnecessary distress. She is happy. I am happy. It feels right. Although I am very fond of Mrs Sturgess, who had been a dancer in her youth, and had a photo of herself, a glam 75 in spangles and lycra, on her mantel shelf in the nursing home, now, at the end of her life, it feels like we are all doing the right thing.
I have tea with Nadja, my trainee. She is unhappy. I always look forward to having tea with Nadja, who is clever and reflective, cares a lot about things that matter, and is just a little lazy about dealing with things that don’t. She is unhappy because she has had a request from a 19-year-old, Charmaine, requesting a termination of pregnancy. This is the kind of thing that matters very much indeed. Nadja has no doubt that she can legally grant this: the law in the UK, deliberately or otherwise, is structured in such a way that, providing the request is made reasonably early on in the pregnancy, the termination can always be medically justified. Nadja has beliefs about the world, largely inherited, but important to her nonetheless, that forbid abortion. Nonetheless, she has no doubt that she will grant it. Charmaine herself has no doubt that this is what she wants, and it is her body, after all. But Charmaine had seemed quite flippant in her request. She has a child already: Robbie, a three-year-old, who, during this most delicate conversation, ran wild, screaming at his mother or ransacking cupboards and drawers until placated by Nadja’s smartphone, which was sticky now with toddler goo. And Charmaine had had a previous termination of pregnancy after Robbie’s birth, and had been started on the pill, but hadn’t taken it because it had made her moody and she was worried about becoming fat.
Nadja is unhappy because she had felt herself becoming angry with her patient. Charmaine had chewed on gum throughout the consultation; she had seemed indifferent, even cold towards her wild son who had tried to cling to Nadja after they had left. Nadja hadn’t shown any of this anger. Charmaine was poor and undereducated, and Nadja is neither. Nadja is too good a doctor to give her patient a hard time because she’s pissed off with her. She is unhappy because she can’t figure out why she’s so angry; what her anger is telling her.
‘If it’s okay to do the abortion once, then it’s okay to do it twice,’ she says. ‘I mean there are obviously better ways of managing her. Her care isn’t exactly a triumph of medicine, but that’s not her fault. And if it’s not okay to do the abortion, then we shouldn’t have done it the first time round. The gum chewing is irrelevant. I just don’t understand … I shouldn’t feel so riled about it.’
Nadja is often tired in the mornings. She has an 18-month-old at home, and she and her partner work part-time to ensure that there is always somebody to pick up Sammy in the evening. Nadja’s days are pressured at both ends in ways that mine no longer are. But no matter how little she has slept, Nadja always pitches up to work in the mornings.
Hungry. Angry. Late. Tired. This is the mantra we repeat to one another – know this about yourself and you avoid your worst mistakes in medicine, and today it seems we are both angry.
I find myself offloading in turn to Nadja. Teatime at my work is often like this. Questions of life and death, in the slow lane.
‘What is it,’ I say, ‘that bugs me so, about looking after Alicia? What is it about her smile that so disturbs?’
‘Why is it,’ asks Nadja, ‘that some bodies seem to matter, and others don’t?’
And how are we to tell the difference?
I once tried to have this conversation, or something like it, with Alicia’s mother.
Alicia had had a series of short admissions over the previous few months, for what seemed on the face of it to be minor problems – more, and more prolonged convulsions, or vomiting, or new transient grimaces, different from her usual smile, which her mother interpreted as distress. Whenever she went into hospital, she would be assaulted with needles and tubes, multiple blood tests, scans, x-rays, endoscopies, and would come home paler, more listless, no better. The hospital was suspicious of Alicia’s mother, or at least she perceived it to be. Many years previously, Alicia’s mother had threatened to take Alicia home from hospital before she was recovered from a bout of pneumonia, and her then consultant, fearful that the child would die, had threatened to involve social services to compel Alicia to stay. The damage to the relationship had never been repaired. Now, whenever illness threatened, her mother would weep bitter tears, cling to her daughter like an animal to its cub. While the ambulance was called, the nursing staff in the most gentle way would have to detach her mother from her daughter, limb by limb, finger by finger, so that the ambulance technicians could transfer her. At least this is how the nurses described it. They struggled with Alicia’s mother. Everyone dreaded Alicia’s illnesses. The very air around Alicia seemed to crackle with hostility and love.
I say, ‘Alicia’s health is very vulnerable.’
We are three: myself, and opposite me, Alicia’s mother, holding her daughter’s hand. Between us, Alicia, looking up at the roof, smiling.
‘I know.’
It occurs to me that I have known these two for almost 10 years. Yet mother and daughter are as opaque to me as on the morning I met them.
‘Sometimes when she gets really unwell, it can be difficult to know what to do.’
She says nothing. I think she trusts me, which is why I have been mandated to have this conversation.
‘… that’s why, sometimes, when she’s really ill, she has to go to hospital. I’d like to talk about what we should do the next time Alicia needs to go to hospital.’
‘Alicia doesn’t like hospital.’
This time I say nothing.
She says again, ‘Alicia hates hospitals.’ I nod, non-committally, thinking: you. You hate hospitals.
‘I know what you’re thinking, Doctor.’
It always irritates me when people say this. When people say this, they’re always wrong.
‘You don’t think there’s anyone in there. You think there’s no one home.’ She turns to Alicia, a smile on her face. ‘The doctor thinks we don’t understand a thing that he says, but I know we do.’
But she’s not wrong in this case. That is exactly what I’m thinking. I think that Alicia perceives some things, and nothing more. Light, hunger, pain, touch, love, perhaps. But I would never say that, to anyone. Too cruel. So I find yet again that I have nothing to say.
‘Only I know when she’s sick, and only I know when she’s well.’
She taps the side of her head with her forefinger, the old fashioned ‘nutcase’ gesture. ‘Power of love, Doctor. It’s the power of love.’ Like I’d know nothing about that.
Is Alicia only valuable because she is loved? Do babies just matter because we love them? And if they are unloved, do they no longer matter?
If Alicia weren’t loved, like Charmaine’s foetus, say, would that make her morally indifferent?
When Rita and I agreed that Mrs Sturgess had reached the end of her life, and that there was no merit in prescribing treatment to prolong her dying, did we do that because we cared about her any less?
Nadja filled out the necessary forms to arrange for Charmaine’s termination of pregnancy, but Charmaine never picked them up. A couple of weeks later, she saw Nadja again. She had changed her mind. What she hadn’t managed to say to Nadja the first time, was that she had just split with her boyfriend, her three- year-old’s father. She was fed up, stressed out and couldn’t cope. Robbie, the child, was driving her nuts, and she couldn’t bear to think of having another. But now she was back together with her man and her perspective was changed. She couldn’t quite believe what she had been planning to do – she was crying, according to Nadja, tears of relief as she said this. ‘It’s like I was planning to kill my own baby!’ And she certainly wasn’t chewing gum anymore. She said thank you to Nadja for talking her out of the abortion, though Nadja had no memory at all of trying to do so. The three-year-old was being looked after by his dad, who was playing with him rather noisily outside in the waiting room, but no one much minded. Charmaine seemed happier, warmer in her manner, cooperative and engaged, and already wearing a glazed and far-off expression on her face, her right hand drifting towards her tummy as she talked about the baby that she was going to keep.
Alicia died suddenly just after her 16th birthday. From time to time, her vomiting would increase, she would become dehydrated and need hospital admission for re-hydration. It was thought that she was having intermittent episodes of bowel obstruction due to a twisting of her small intestine – small bowel volvulus. She never had sufficient resilience for this to be definitively treated, and, besides, years and years of medical complexity had left her mother averse to having her daughter messed around by doctors. She had developed bile-stained vomiting, eventually been admitted to hospital, where she had been assessed by the medical team, and sent home, because she had seemed to be settling. Alicia, according to her mother, was always distressed by hospitals, and always wanted to be home as soon as possible. But she had collapsed later that night at home, becoming feverish, dry, vomiting uncontrollably, and seeming less alert. By the time she was readmitted, she was very sick. She had irreversible damage to most of her small intestine, was developing septic shock which wasn’t responding to antibiotics, and was clearly dying. Her mother, bereft, had sat with her through the night, holding her hand, fixing her hair, watching as her daughter slipped away.
It was obvious in hindsight that Alicia should never have been sent home. At the time of discharge, she already had had a flicker of fever, her pulse and breathing were up, she just wasn’t ‘right’. But the consultant looking after her seemed not to have taken proper account of this, or if she had, hadn’t been clear or explicit enough in her reasons for deciding to let Alicia go. An internal hospital enquiry affirmed culpability: it was one of these medical disasters which doctors dread, that happen so easily, that so blight our lives. Blame was apportioned to many doctors and nurses, some of whom went off work sick with the misery and remorse from having let their patient down.
Alicia’s mother was more forgiving than the hospital administration. She said afterwards that, although it was important that people learn from their mistakes, they shouldn’t be punished. What mattered was that her daughter had had a good life while she lived – a wonderful life. She had been surrounded by people who loved her and cared for her. Her death was just a tiny sad part of something that was much bigger, and ultimately beautiful. We all have something to learn from the way Alicia approached her life, at least that’s what her mother thought. So she wasn’t going to give in to anger or bitterness or blame. She would wipe away her tears, and she would carry on. And she could tell, from the smile that her daughter had worn right up to the moment of her death, that that was what Alicia would have wanted.