Dr Bharadwaj Chada reflects on the critical importance of keeping family members well informed with regard to their relative’s progress.
In her early nineties, gregarious, and only a tad matronly, Aida fast became a force to be reckoned with, as she took up residence in the farthest side room adjoining the MDT room. She’d been admitted with infective endocarditis and had begun to accumulate fluid in her lungs and limbs, needing such high doses of IV diuretics that the non-cardiologists amongst us squirmed with each increased prescription. Her swollen arms and uncooperative veins meant the phlebotomists seldom triumphed during their rounds, and it often fell to me to attempt the venepuncture; as much a rite of passage as it is an essential clinical skill, a central arc in the junior doctor’s bildungsroman.
She and I settled into a fairly predictable, though no less entertaining, routine: I’d mock-chide her for the obstinacy of her vessels and their refusal to yield the sanguine fluid contained within; she’d rebuke me for wearing my scrub trousers too low around my waist, or for having not yet found a wife, or for not saying goodbye as I left the ward the previous evening.
Eventually, after several weeks’ treatment with a concoction of potent antibiotics and so much diuresis her kidneys beseeched us for respite, it became apparent that we were waging a losing battle. Continuing active treatment resembled an exercise in futility, as palpating her oedematous limbs left deep impressions, like imprints in well-rested dough. Her wit remained incisive throughout, though her gift of repartee now belied a sense of weariness. My consultant, Dr Simon, a mild-mannered interventional cardiologist who occasionally plied his wares as a general physician, had taken the decision to discontinue active treatment. We felt it in her best interests to opt for best-supportive care, pre-empting the symptoms that she would likely experience, and commencing medications in anticipation of their onset. He requested that her son, Anthony, attend the ward, so that we could explain the rationale behind our decision.
When he arrived later that afternoon, I found Anthony to be debonair and personable, his easy-going demeanour in keeping with his lawyer profession. In the pre-pandemic era, I imagine he possessed a firm handshake, someone accustomed to dictating the tempo and pace of the conversation. One of the pandemic’s great teaching points for us as doctors has been to learn to interpret facial expressions from the top half alone of one’s face, the bottom half almost perpetually shrouded in fifty square inches of sky-blue polypropylene. He had uniquely expressive eyes, creased at the corners and crow’s feet on display when we shared a joke, high-arched eyebrows indicating surprise, or furrowed together in concentration. Aida was the matriarch of a large family, and Anthony the designated spokesperson for her numerous progeny. He listened carefully as my consultant tactfully explained that we had reached the limits of what could be achieved for his mother, assimilating the information provided to him as though preparing for his next courtroom case. Occasionally, he’d ask considered questions: What did the consultant mean by anticipatory medications? Would the family be permitted to visit, pandemic restrictions notwithstanding?
And for all of modern medicine’s achievements, he asked the question doctors are perhaps least equipped to answer, “how long does she have left?”.
More junior doctors run the risk of sounding decidedly non-committal when posed the prognosis question, a function of clinical inexperience at determining longevity, married with a reluctance to navigate difficult conversations. I watched on as Dr Simon assiduously explained that, whilst it was difficult to suggest a timeline with any great certainty – patients, on occasion, greatly exceed our expectations – Aida was unlikely to survive much beyond the coming week.
At this, Anthony sat back in his chair, craned his neck back and lifted his gaze to the ceiling. After a pause, he leant forward and nodded almost imperceptibly, seemingly appreciative of the direct response. His mother had had a good innings, he reasoned, and to expect more was misguided, perhaps greedy. The sister-in-charge, Nicola, like me a silent spectator for most of the conversation, offered Anthony our assurances that his mother would continue to be nursed in the side room, instead of finding a community bed for her, as was customary for palliative patients. He appeared heartened by this, indicating that his mother had grown comfortable in our care, and to move her elsewhere would only serve to distress her.
Aida remained upbeat and free of pain in the days that followed, jointly cared for by the ward staff and the palliative team, whose compassion and fastidiousness in overseeing the care of the dying patient was both greatly instructive, and inspiring. Nonetheless, we worried she’d deteriorate unexpectedly and with little forewarning, as often occurred with end-of-life patients – gradually, then suddenly, to borrow a Hemingway phrase.
As the days rolled by and Aida continued to remain well however, we began to wonder whether we’d misread the vicissitudes of life, and perhaps her prognosis was longer than her earlier symptomatology had led us to believe. The palliative team reasoned that it may be appropriate for Aida to be cared for elsewhere, at the local hospice or community hospital.
As the medical team, we had little reason to contest this suggestion: we were an acute cardiology-come-medicine ward, reared largely on a diet of pneumonia and urosepsis. Under the tutelage of the palliative team, we strove to remain attentive to Aida’s needs, yet the fact remained that she stood to benefit from the expertise of our colleagues at the specialist palliative facility. Accordingly (although without any real confidence, given the notoriously long waiting times) a referral was made to the surrounding palliative hospitals.
To our surprise, it was brought to our attention the following afternoon that a bed had become available at a community hospital in the neighbouring town, some ten miles from our own hospital. From a medical and nursing perspective, we were bolstered by the news. Palliative beds seldom became available so quickly, and in a climate of delays and lengthy waiting times, this represented a rare victory.
Anthony arrived later that day to visit his mother, her favourite Parma ham bagel in tow. Aida’s nurse, Shanti, caught up with him as he approached his mother’s room, to notify him of the good news that our referral had been accepted, and that his mother was due for transfer the following day. He looked at the nurse quizzically. It was the first he’d heard of the move, a mistake perhaps, or a mere administrative oversight. He requested that she clarify whether his mother was indeed to be moved, and if he could speak with a doctor to elucidate how this turn of events had come to pass.
I had been away for a few days, and as Shanti brought to my attention news of Anthony’s consternation, I pored over the medical notes and was dismayed to find that we hadn’t updated Anthony since that last conversation in the quiet room with Dr Simon, Nicola, and myself. The decisions and events that had since ensued, whilst medically conscionable, had not been communicated to Anthony, who was at liberty to feel distressed at how the situation had transpired.
The erstwhile urbane and affable Anthony was visibly aggrieved. I apologised at length for the crossed wires, conceding that any decision involving the care of his mother ought not to have taken place without his knowledge. I reiterated that the care his mother had received with us would be matched, nay, surpassed, by that which would be afforded to her at the new hospital, on account of their expertise and skill. A small part of me felt as though I was more reassuring myself than placating him, the oversight in communication justified in the service of some greater good. Somehow, I wasn’t convinced. The matron, Patrick, a tall man with stooped shoulders and a port-wine stain to mirror Gorbachev’s, issued apologies of his own, explaining that although ceteris paribus we would’ve liked for Aida to remain with us, the hospital was facing acute bed pressures, and our hands were tied when it came to the transfer.
By my own admission, it wasn’t a satisfactory resolution. Anthony entered the meeting donning his litigator’s cap, determined to understand how the situation as he found it today was so patently at odds with what we’d discussed the last time we’d met. By the end, he appeared resigned, conceding defeat at the hands of hospital rules and bureaucracy. Apologies were our only explanation, a shrug of the shoulders our only mea culpa.
As doctors, we’re sometimes guilty of playing hopscotch with patients’ notes, skipping from one doctor’s entry to the next, bypassing the intervening physiotherapists’, pharmacists’, and specialist nurses’ entries, each containing crucial elements of patient information. Health IT commentators note with a cruel irony that digitisation efforts designed to give doctors the gift of time and improve cross-disciplinary communication, have in many cases had the unintended consequence of impeding it. Making a request of our colleagues is now often a case of adding a task to an electronic system, where previously it was a simple tap on the shoulder. Aida further suffered from discontinuous care, a predictable externality of the modern medical rota, and improper handover; I was one of several doctors who’d looked after her, each responsible for delivering some aspect of her care, but none having ultimate oversight for all of it.
Ultimately, these are excuses masquerading as explanations. The fact remains that timely and honest communication goes some way towards making otherwise bitter pills somewhat easier to swallow. For circumstances beyond our control, such as the necessity for Aida to be transferred to another hospital, keeping next-of-kin periodically and accurately updated could have helped mitigate the conflict and distress the family endured.
Committed, determined healthcare professionals can be found in abundance in all healthcare organisations, whose primary goal is to improve the lives of the patients they serve. Patient-centred care is nevertheless far greater than the sum of its parts. Robust information sharing, between patients and staff, as well as within and between disciplines, particularly during such emotionally-charged moments, is centrally important in keeping patients at the heart of our every endeavour.
*** please note care has been taken to de-identify the patient, family, and staff information presented in this blog. The names used in this article bear no resemblance to the individuals involved ***
Bharadwaj is an Academic Foundation Doctor. He graduated from King’s College London in 2019, and previously obtained a First Class Honours degree in Healthcare Management. He has a keen interest in creative writing and narrative medicine, and has undertaken special study modules in the portrayal of medicine in the media and in literature whilst an undergraduate.