‘That was so cool! He looked a thousand times better! And his bloods too!’
Rob, our junior resident, was bounding down the stairs beside me, breathless with the thrill of the last 24 hours. We had met a drowsy man with AKI, his relative a faraway voice on an interstate call:
‘sure, whatever needs fixing’. We had catalogued his asterixis and acidosis, our medical student alongside – ‘What about frost! Have you ever seen frost?’ – and set him up for dialysis, plumbing the femoral vein and righting biochemical wrongs.
We reached the door to Emergency. ‘OK, Rob, we’ve got another admission.’
Peter was a retired teacher on haemodialysis for 3 years, now tired and off his food with what sounded like a diabetic foot infection.
‘Yes, cubicle 3. 76 year old man. I’ve pre-filled his history notes. The usual…’ I watched Rob’s shoulders hunch with a familiar burden: ‘..CKD5D, CAD, CCF, COPD…all the C words. Oh, and diabetes and OSA and gout.’
All the C words. In 1984, Mt Sinai Hospital’s director declared that, in hospitals, ‘chronic disease is an accusation’. Could this still be true?
We work in a healthcare model which, despite a comprehensive network of community services, maintains as its centre of gravity an acute-care-oriented hospital. These multi-storey hubs of teaching and learning are steeped in habits that condition even the most compassionate of us to attach more value to curing disease than to caring for chronicity.
Of course that’s not the case every day, everywhere. Incredible programs and individuals – nurses, dieticians, physiotherapists, carers, podiatrists, doctors – support people with chronic illness. We do a lot more of that than anything else. And it’s on the world agenda: the WHO has a global action plan for non-communicable diseases. But, if we want to hold up a mirror, keep improving, and support our trainees, it’s important to connect with the truth that almost all the machinery of our working lives – acute hospitals, bedside teaching, ward rounds, grand rounds, discharge targets, Kt/V, CRP, Kaplan-Meier curves – has facilitated much more chronicity than it was ever built for.
A short stroll back through the history of Western biomedicine reminds us that, in the medieval period, hospitals were mostly ecclesiastical shelters for the infirm, aged and poor alike. After the religious turmoil of the Reformation closed most of these facilities across Europe, the 18th and 19th centuries saw an entirely new type of professional institution rise in their place. The British Medical Journal in 1897 reflected that the ‘old idea of a hospital as an asylum or refuge’ had ‘given place to the modern notion that it is a great and complicated piece of machinery, every detail of which…has for its aim and object the cure of the patient’.
Many of the ‘big names’ that have brand penetration into medical schools and living rooms across the world today – Massachusetts General, St George’s, Addenbrooke’s – trace their origins to this period. These hospitals focussed less on care of the chronically ill than on scientific analysis and eradication of disease, a shift that was nowhere so evident as in their strict admission criteria. Addenbrooke’s in Cambridge was typical of these institutions in stipulating that no one with ‘infectious distemper, having habitual ulcers, cancers not admitting of operation, consumptions or dropsies…or judged incurable…be admitted as inpatients’.
What exactly was driving what the BMJ called ‘the elimination of the “chronics”’? What embedded this enduring prejudice against the ‘C word’?
In fact, three different C words:
In the wake of the Reformation, the burden of caring for the sick was shared by a small number of hospitals with finite resources. Many of the hospitals opening in the 19th century were “voluntary” general hospitals, which, unlike royal chartered or posthumously endowed hospitals, relied on the ongoing philanthropic contributions of a subscriber base. Patients discharged cured were good for business. Langdon-Davies puts it bluntly in his history of Westminster Hospital: ‘it was get well or get out’. Sound familiar from your latest length-of-stay review meeting?
In this pre-antimicrobial era, contagion was the enemy. Long-staying patients were, as one 1771 doctor put it, ‘liable to contract a malignancy from the bad air of a hospital’. Thomas Percival advised in his 1803 Medical Ethics that medical men should keep their charges away from the ‘inbred diseases of hospitals’. Anyone who’s seen death from 21st-century nosocomial sepsis would probably agree.
Beyond practical considerations, however, were the seismic shifts in medical ideology in the long 19th century. It is in this period that Michel Foucault locates what he called ‘the birth of the clinic’: the origins of modern biomedicine. Developments in clinical examination, such as percussion and auscultation, together with advances in pathological anatomy and bacteriology, enabled doctors to ‘map…disease in the secret depths of the body’ (Foucault, p167). Doctors honed their craft through close scrutiny and comparison of diseases in inpatients, and hospitals specifically wanted ‘acutely sick patients with interesting diseases for teaching purposes’. Fellow hospital doctors, look me in the eye and tell me you’ve never described your inpatient list as ‘slim pickings’ to a disappointed student prepping for exams.
Clinical examination and investigations radically reshaped the relationship between doctor, patient and disease. Where the pre-modern medical man was more likely to visit a short-winded person in their home, hearing a description of their ills whilst analysing the air and food of their environment, a 19th-century doctor honed his understanding of heart failure by lining up 10 patients in the ward, tapping and listening to each chest, and correlating with post-mortem findings. Nicholas Jewson’s landmark article, ‘The Disappearance of the Sick Man’ describes exactly this: the sufferer is no longer an individual sick man, but a patient. Not a subject, but an object.
Why should it matter that hospitals excluded the chronically ill? Given the financial burden, the risk of contagion, the incessant percussing and auscultating, wasn’t it nicer to stay away? While the wealthy could draw on many alternative medical services, the penniless with chronic illnesses found themselves on the street or in the workhouse. More important even, from our contemporary viewpoint, was the status of the 19th-century hospital as a prestigious hub of medical education and research at the core of the medical fraternity. Sir James Paget testified to a Royal Commission in 1882 that ‘the great hospitals…determine for the main part the character of the profession’. Today’s readers of NEJM’s case records of the MGH, or the Mayo Clinic Proceedings, might agree with him. In that truly formative period of medical history, professionals aspired for the first time to emulate prominent hospital doctors. And hospital doctors wanted to treat acute, curable disease. Henry Halford, then President of the Royal College of Physicians, told medical students in 1834 that the physician’s ‘one great object’ is ‘the cure of diseases’.
Given this legacy is it any wonder that doctors, particularly those training in hospitals, buckle under ‘frequent flyers’, ‘heartsinks’ and ‘long-stayers’, punctuated occasionally by the ‘real’ work of curing acute disease? Happily for all, we’re now infinitely better positioned to treat ‘dropsy’ than our pre-modern counterparts, and the intervening scientific progress is to be celebrated, but we could still learn something from them. 300 years ago saw a profound shift in what it meant to be a doctor. Perhaps the time is ripe for another one.
Back in Emergency, we approached Peter’s cubicle. ‘You’re Nephrology?’ said the floor manager, ‘Let me know ASAP if you can get him out of here, OK? He’s VRE and the ward’s bed-blocked.’
Peter gave us a weak smile of welcome. Rob efficiently assembled paperwork, syringes and blood culture bottles, and I perched at Peter’s bedside, listening for his story above next door’s alarming monitor.
‘Dialysis? It was alright to begin with. Couple of good years.’ He recalled afternoons tending his garden, his love of an outdoor BBQ dinner.
‘They’re trying their best, tweaking the machine and the tablets. I lie there as long as I can – 5 hours now. But I don’t feel like I did. I’m lying around so much my heel’s all motheaten. See? Looks like my poor roses since the caterpillars moved in.’ Rob put his head round the curtain, phone at his ear, and made eye contact with Peter’s foot. ‘It’s pretty black, yeah. Comorbidities, yeah, I know…’ – Rob’s voice tightened with a nervous laugh – ‘Listen, he lives at home, pretty sharp. OK great. 7am surgical ward round. Thanks.’ He ended the call, looking relieved. ‘Peter, don’t worry, we’re going to get you fixed.’
Long story short, Peter met the surgical team, and calmly, firmly, sent them away. ‘I’ve thought about it a lot over the years. If I’m not walking into dialysis on my own two feet, I’m not going at all.’ I listened, and nodded, and waited. I could feel Rob’s agitation – restless feet tapping, jaw clenching – and it eventually found voice: ‘Sure, but Peter, you could get through it. We can eventually get you up and around. We can cure this.’
Peter chose to move to a big room down the hall. He no longer went to dialysis, but the dialysis nurses all visited him, drawn by the chatter and the smell of barbecued lamb. Most mornings, Rob left the ward round before we got to the big room. ‘I’m busy with the discharge scripts. I’ve got to review that tachycardia.’ Late one evening, I walked past Peter’s room, and heard Rob’s voice. ‘See, the mechanism was jammed, that’s why the head of the bed wasn’t coming up for you. I’ve released it now.’ From the doorway I watched Peter relax back onto the pillow, [smiling] as his deep voice came quietly in reply: ‘Doctor Rob, you’ve got me all fixed.’ Rob caught my eye, and his face told me that, in a quiet moment, he‘d seen through the foot, through the patient, and found the man. And we were both breathless with the weight of it.
*Names and specific case details have been changed.
NSMC Intern 2018