My favourite patient lies dying in my arms.
All of the sentiment expressed and my choice of terminology in the above sentence are painfully contrary to the place where all of my prior medical training is supposed to have brought me. The last thirteen years of my life have been dedicated towards turning me into a finely tuned and rational life-saving machine. I am not supposed to form emotional attachments to my patients or hold them passively and powerless while they die. I’m supposed to secure their airways, stabilise their blood pressures and attach them to life-support machines.
But this is the reality in which I find myself: my favourite patient lies dying in my arms.
Exactly one month ago, I wrote about Gulzabira, a 28 year-old former nurse, weighing just 36kg, with ‘chronic’, probable extensively drug-resistant tuberculosis (XDR-TB), who was our first to start on drug-resistant treatment here in Shumanay. Given her frailty and extent of her disease, I took to visiting her regularly at her home, checking she was okay and tolerating the drugs, maybe more often than clinically necessary. Each time we’d be greeted by her big grin. Her mother would grab my hands and beam at me with smiling eyes: we had come to help her daughter, to whom she was devoted.
On our last visit I asked my translator, Yesemurat, to take my photo with Gulzabira, my arm wrapped round her, her sweetly smiling at the camera. As we left her house I said to Yesemurat ‘As a doctor I’m really not allowed to have favourites, but if I was, she would be it.’
Now it’s Tuesday morning, 7:30am and I am called by Gulzabira’s general practitioner in a panic, ‘Please can we come, there’s something wrong.’ I call my Ministry of Health counterpart Dr Tleubergen and he leaves immediately for her house in an ambulance to retrieve her while I drive to the district. We meet at his recently evacuated, empty TB inpatient department (IPD). As soon as I look through the back doors of the ambulance it is obvious the situation is desperate. We carry her inside. She is drawing fifty breaths a minutes and unable to speak, her arms flail aimlessly and her chest is full of crackles on auscultation with my stethoscope. Her eyes roll back and she loses consciousness. Her mother spits on her face to try and revive her. I hold up her Chest X-ray Tleubergen had arranged en route: no pneumothroax, but the lung fields are obliterated by white fluffy shadows. She is in acute respiratory distress syndrome. She is effectively drowning. I bark a shopping list of drugs and equipment I need at the IPD nurse. She looks at me blankly then returns from the drug cupboard with one 500ml bag of fluid. TB drugs and empty beds is really all they have. And in Karakalpakstan, MSF is running an ambulatory, outpatient-based TB programme, and so we are really not equipped to care for such cases.
At this point in a UK A&E resuscitation room I would be in my element. I would feel in total control, issuing orders to nurses and juniors who speak the same language as me and who have had the same training, running tests, inserting lines, getting the patient intubated. But now, without the tools of my trade to keep my hands occupied, they feel horribly empty and so I hold onto Gulzabira’s left hand, stroke back the hair from her forehead with my other hand and whisper lies to her that she will be alright. I turn to Tleubergen and tell him what he already knows, that if we stay here she’ll be dead in the next fifteen minutes. I ask him to take us to the best and nearest clinical area with oxygen. We drive her to the district’s main hospital and bundle her in.
The two attending doctors rightly start protesting at our arrival: with our trademark respirator masks we are universally recognised as the TB doctors and our carried goods are highly infectious. But we have no time to negotiate – we pull Gulzabira into a side-room, close the door, open the windows and snap masks onto the faces of the doctors and nurses and I tell them we can debate infection control matters later.
I begin pleading with the hospital staff to bring whatever equipment they have. But not only is language a barrier (I am speaking quickly in a foreign language using many technical terms with which my translator is not familiar), but I am also trying to practise a medicine very alien to this hospital. At home, I have run such drills thousands of times with similarly sick patients to the extent I could do them with my eyes closed. But now it feels like I am trying to run through treacle. Why am I asking them for these drugs and equipment? This is not how they do things, they have there own very different protocols. It’s as if my hands are tied behind my back. It makes me feel physically sick to my stomach. We manage to locate an oxygen saturation monitor and put it on her finger – it reads 40%. Anything less than around 88% is incompatible with the brain receiving enough oxygen to survive. We locate a concentrator that can deliver a pitiful five litres of oxygen a minute and Tleubergen and I start ‘bagging’ her furiously.
Momentarily Gulzabira’s oxygen saturations hit 70% and she regains consciousness and she cries out, but they then rapidly plummet again. I ask for broad-spectrum antibiotics in case there is any super-imposed pneumonia, high dose steroids in case there’s any inflammatory process to be suppressed and frusemide as a desperate attempt to dry-out her lungs. But I know it’s futile.
Since I qualified as a doctor I have had a recurrent dream I have never before told anyone, probably because I am keenly aware of the underlying neurosis it reveals. It is always a variation on the same theme: I am in a public, non-clinical place and I witness a loved-one suffer a cardiac arrest. I try to run to them but find my legs are paralysed. I try to touch them but I cannot move my arms. I try to shout out for help or phone an ambulance but no noise comes out of my mouth. And then I wake, relieved that I was only dreaming. Now, standing by Gulzabira I am living out my dream. We have done the hopeless basics and anything more sophisticated is beyond our capacity. Her parents stand, similarly helplessly, in corridor, silently sobbing.
For a fleeting nanosecond an instinctive desire rises in my belly, something I never, ever imagined I could wish for as a doctor. I wish that she would just die, to end the ordeal. Gulzabira starts to move her arms in a stereotypical fashion we call ‘decerebrate posturing’, which indicates severe hypoxic brain damage.
Well what was I expecting? I signed up to MSF didn’t I? Did I really think I wasn’t going to be faced with this scenario? Did I really think it was all going to be plane sailing or like at home in my UK tertiary referral hospital intensive care unit? This is the reality of medical care in these settings. Or they wouldn’t call us ‘Doctors without borders’, they would call us ‘Doctors thanks for showing up, but you really needn’t have bothered we’ve got it covered.’ In fact, for many of my MSF colleagues in other, more ‘emergency’ projects, similar scenes will be a daily occurrence. I have seen enough footage of lonely MSF doctors hanging up hopeless drips for unconscious, skeletal, near-corpses in refugee camps. I am lucky to have made it five months here without a previous similar episode.
In the West, we never see such cases of chronic, long-standing tuberculosis, so TB patients tend to sail through treatment. It is an eminently curable condition. But Tleubergen tells me he is familiar with such cases, as chronic TB is all too common in Karakalpakstan: after so many years of being diseased sometimes the lungs just cannot cope any more and decompensate. And these patients can never be saved.
Driving home from the field that evening, I look on my phone at the picture of me with my arm around my dead friend, and I realise I have lost any confidence in my ability to help anyone, any confidence I have in this programme, any desire to be here in this country and that I am a terrible and useless doctor.
But as the clichéd old saying goes, ‘the darkest hour of all is the hour before the dawn’. Every death from TB is avoidable. Every death from TB is not due to a medical reason. Forget for a second about the technical nitty-gritty detail of tissue necrosis and compromised gas-exchange. In this modern age, all deaths from TB boil down to a lack of commitment from the international political community and the pharmaceutical industry to address this disease. I cannot pretend I can draw any comfort from Gulzabira’s death. But maybe her story will spur you to join MSF in its call for universal access to good TB treatments: www.msfaccess.org/our-work/tuberculosis? It’s still not yet too late for hundreds of thousands of other TB patients.
