#BeHuman: when doctors get ill

It often takes a doctor to get sick to change things. #BeHuman #MSBlog

It often takes a doctor to get sick, and have a bad healthcare experience, to change things. I look after many doctors who have MS and several of them have been very helpful in giving advice on our service. You all know who you are, thank you. 

The following perspective in this week’s NEJM is another eye-opener and demonstrates the impact that the ‘industrialisation of healthcare’ is having on the practice of medicine; it is dehumanising it. Several points that are made in this very personal story are relevant to MS. I would urge you all to read it, particularly all HCPs.

The NHS and the whole healthcare sector is in flux. We are entering an era of disruption and change and there is no better time to make a difference than now. I am aware that we don’t run a Michelin-star MS service, which is what we want to achieve. But if you have any ideas and comments to help us at Barts-MS improve our offering please let us know. We have thick-skins so you can be brutally honest. 

Rana Awdish. A View from the Edge — Creating a Culture of Caring. N Engl J Med 2017; 376:7-9.


….. In 2008, an occult adenoma in my liver ruptured, and I effectively bled to death in my own hospital. I lost my entire blood volume into my abdomen, triggering what’s known in trauma as the Triad of Death — a kind of suicidal spiral of the blood in which it becomes too acidic and too cold to clot. I would receive more than 26 units of blood products that night — packed red cells, platelets, cryoprecipitate, fresh frozen plasma. I would go into multisystem organ failure, my liver and kidneys would shut down, I would be put on a ventilator, have a stroke and a complete hemodynamic collapse. The baby I was 7 months pregnant with would not survive, but I would — thanks to the incredible skill and grace of the teams of professionals who cared for me….

….. My recovery involved five major operations including a right hepatectomy. I had to relearn to walk, speak, and do many other things I had taken for granted. But in the process, as a patient, I learned things about us — physicians and other medical professionals — that I might not have wanted to know. I learned that though we do so many difficult, technical things so perfectly right, we fail our patients in many ways.

…… As a patient, I was privy to failures that I’d been blind to as a clinician. There were disturbing deficits in communication, uncoordinated care, and occasionally an apparently complete absence of empathy. I recognized myself in every failure…..

……. When I overheard a physician describe me as “trying to die on us,” I was horrified. I was not trying to die on anyone. The description angered me. Then I cringed. I had said the same thing, often and thoughtlessly, in my training. “He was trying to die on me.” As critical care fellows, we had all said it. Inherent in that accusation was our common attribution of intention to patients: we subconsciously constructed a narrative in which the doctor–patient relationship was antagonistic. It was one of many revelatory moments for me……

….. I heard my colleagues say things to me in ways that inflicted more suffering, even when they believed they were helping.

….. “We’re going to have to find you a new liver, unless you want to live here forever.”

….. “Are you sure your pain is an eight? I just gave you morphine an hour ago.”

…… “You should hold the baby,” someone said. “I don’t want to be graphic, but after a few days in the morgue, their skin starts to break down and you won’t be able to anymore, even if you change your mind.”

…… My experience changed me. It changed my vision of what I wanted our organization to be, to embody. I wanted the value of empathetic, coordinated care to spread through our system. I shared my story openly. I wanted the system leaders and every employee to know that everything matters, always. Every person, every time.

……. How do you build and maintain a culture of shared purpose in the infinitely complex arena of health care? How do you ensure that you engender in employees a dedication and commitment to doing what’s right? Identifying the gaps between the stated mission and values of an institution and its actual delivery of care is critical. As systems, we have to recognize and acknowledge our mistakes, our shortcomings, just as individual physicians do. We need to reflect on times when our care has deviated from what we intended — when we haven’t been who we hoped to be. We have to be transparent and allow the failure to reshape us, to help us reset our intention and mold our future selves.

…… Bravely, my institution responded to my experience by radically revising the way in which we introduce every new employee to our organizational culture — colloquially referred to as “onboarding.” Our institutional leaders had already launched a “Culture of Caring” curriculum for nursing. But they understood that to truly change the culture, all new employees, including physicians, needed to internalize our institution’s values. So they expanded their efforts, incorporating the failures and successes of my patient story to illuminate our shared purpose and build an engaged culture.

…… Through the training that was developed, participants learn to articulate their purpose as distinct from their job. Transporters hear how meaningful it was to me when one of their own — having seen me break down when questioned by someone in radiology — took it upon himself to warn the technicians performing various tests not to ask about the baby whose small pink wristband was still in my chart. He asked his colleagues to do the same. In an 800-bed hospital, the transporters had united to form a protective enclosure around one patient.

…… Similarly, radiology technicians learn what a kindness it was that they stopped trying to awaken my exhausted husband to move him from my bedside for my portable x-ray, instead throwing a lead cover over him and letting him sleep. The power of these stories shows new employees that they have a purpose and that they are valued.

…… In addition, new employees are taught to recognize different forms of suffering: avoidable and unavoidable. Our goal is to find ways to mitigate suffering by responding to the unavoidable kind with empathy and by improving our processes and procedures to avoid inflicting the avoidable kind whenever possible.

……. Our failures are analyzed, and our successes shared. Consider the power of that choice. Early on, all new employees hear about how we recognize and admit to our failures. How we partner to ensure that transparency keeps us from repeating our errors. How we hold each other accountable. By illuminating our failures, we can begin an authentic conversation about shared purpose, resilience, and building an engaged culture.

…… We believe that by focusing on our missteps, we can ensure that the path ahead is one of compassionate, coordinated care. When we are ashamed, we can’t tell our stories. They become inaccessible to us. In the wake of painful experience, we all seek meaning. It is the human thing to do, but it is also the job of great organizations. The stories we tell do more than restore our faith in ourselves. They have the power to transform.

2 thoughts on “#BeHuman: when doctors get ill”

  1. I am a GP. I was diagnosed with RRMS two years ago and doing pretty great post Campath.On the day I was diagnosed I was utterly distraught. I've cared for people in their last days with end stage MS and when diagnosed that's all I could see in my future. Logic went out the window, the lady in her 70s off on a walking holiday who yesterday asked me to fill in her health insurance form because she had MS was a distant memory. I was sat at my kitchen table petrified. Then my phone rang. Is was 8.30 at night and a ladies voice was at the other end of the line. It was my MS nurse. My neurologist had just let her know he had diagnosed me and she wanted to see how I was getting on. We talked for nearly and hour. Her calmness, genuine empathy and knowledge astounded me. She helped me through my darkest hour. To her it was just her job. I imagine she has had many a late night call to a newby like me but I will never forget her kindness. She (and thousands like her) really are the backbone of the NHS and why it is still running despite the chronic neglect and underfunding from the government.If I've learnt anything from my experience as a patient it was a quick phone call goes a long way. I now ring all my newly diagnosed patient with cancer/ms/chronic conditions. Some have questions, some are sick of talking but a few have been as petrified as I was and the phone call is appreciated.

  2. Thank you very much for sharing this, and thanks as always to the Bart's team for the wide- ranging things they share that inform, assist and benefit all us PWMS! I'm now sharing some with family and friends.

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