dotMD — medical tales of the unexpected

If you were to have taken home one message from this year’s dotMD conference, it was that stories and narrative sit right at the heart of medicine and of being human.

The sixth ‘festival of medical curiosity’ took place in Smock Alley Theatre in Dublin on 9 March. The sold-out event was organised by Galway doctors Dr Ronan Kavanagh, Dr Muiris Houston and Dr Alan Coss, with a strong Twitter influence on the day from speakers and attendees. There were musical and poetry interludes between talks.

<h3><strong>Activism </strong></h3>

Empathy should be better incorporated into doctor training and medical schools need to highlight the voices and stories of patients to help improve empathy, the conference heard.

“At the moment, we have a slightly ‘tick-boxy’ approach to teaching empathy… [role playing] is very artificial. I believe the best way to instil a sense of empathy is to make patients much more of a fundamental presence in medical school,” commented Dr Rachel Clarke, a British palliative care doctor.

“You can’t empathise with something you don’t understand.”

An ‘accidental activist’, Dr Clarke is a former TV journalist who became a doctor and rose to fame after being heavily involved in media coverage of the UK junior doctor contract strikes (which centred on attempts by UK Health Secretary Jeremy Hunt to impose a 5/7 contract on junior doctors without extra resources).

<strong>Dr Rachel Clarke</strong>

She spoke about the role of story-telling, empathy and advocacy in medicine during her address to dotMD 2018.

“I believe fundamentally that journalism and medicine share the same core, the same bedrock, and it is that of words, in particular story-telling. It is absolutely at the essence of both of those professions. As a documentary-maker, I used to tell other people’s stories for a living and now as a doctor, my job is to listen to my patients very carefully, very attentively, and hear their stories and try with the help of my team to shape those stories for the better,” she said.

Dr Clarke highlighted the stress and upset felt by junior doctors in the UK during the contract saga. She said the government presented the situation as an attempt to improve patient care that was being stalled by doctors demanding more money to work weekends. She spoke of her need to fight back “against the spin” and present the doctors’ perspective and highlight the inadequate resources and staffing in the NHS.

“The moral there is that it doesn’t matter how cleverly you spin… in the end, words come up against reality and you can’t fight that. And the reality in the winter after the dispute ended was that conditions in British hospitals were so dreadful, so understaffed, that the Red Cross described it as a humanitarian crisis.”

She said the UK government’s response to the crisis was not to increase resources; instead, they used “words”.

“They sent a set of strongly-worded diktats to all the CEOs of all the hospital Trusts in the country, telling them, ‘you will not treat anyone in a corridor’, ‘you will not leave any patients trapped in ambulances unable to get into your over-run A&Es’, as though any hospital was choosing to do so, but the CEOs then started speaking out anonymously in the press… saying the government was barking mad.”

Dr Clarke said the saga also highlighted the importance of doctor advocacy.

“As doctors, we are in a unique position to advocate on behalf of some of the most vulnerable people in society. We all know there is a socioeconomic gradient in health and typically, patients are not the people with power, or voice or status or wealth in society; they are some of the most vulnerable members of our society.”

Words are also a form of medicine, she said.

“We use words to help people who are frightened, vulnerable; we use them to build trust; we explain diseases, treatment. Sometimes in palliative care, when there is no scope anymore for any drug or any treatment, no means of prolonging life, words can be all we have but, my goodness me, they can be powerful because they are a way of connecting ourselves as physicians with our patients and ensuring they know we are with them, caring for them, right to the end.”

Continuing the theme of story-telling in medicine was Dr Danielle Ofri, Associate Professor of Medicine at New York University School of Medicine, US, and author of <em>What Patients Say, What Doctors Hear</em>, an exploration of doctor-patient communication and how refocusing this conversation can improve health outcomes.

Dr Ofri discussed the power of narratives and patient stories, saying doctors can trace their entire medical education and careers through a series of detailed stories.

“We find it so hard to remember all these [medical] facts, but no-one ever has trouble remembering their most powerful patient stories… The power of narratives, these stories, hold us in a way that facts simply do not.”

Dr Ofri said doctors’ communication with patients “is a very sophisticated technology” and allowing the patient as much time to speak as possible is key, as their story will reveal their illness.

“Our patients speak to us in metaphor. It is our job to unpick the metaphor.”

Concluding her talk, Dr Ofri said: “In the practise of medicine, I literally believe that medicine boils down to a doctor or nurse or one caregiver with one patient in one room with one story.”

<strong>Dr Danielle Ofri</strong>

<h3><strong>Mindfulness and the brain</strong></h3>

Mindfulness and the brain was the theme of a fascinating session at dotMD co-hosted by Dr Ash Ranpura, a neurologist and neuroscientist who has been active in brain research for over 20 years, and Buddhist monk Gelong Thubten, both of whom have written a book, together with Ruby Wax, on the subject.

Dr Ranpura highlighted how it has been proven scientifically that meditation can cause physical, measurable changes in the brain, but it takes dedication and time.

Medical students in NUI Galway are being taught compassion-based mindfulness by Thubten in order to counteract stress, which suffocates compassion and promotes burnout.

<h3><strong>Psychosomatic disorders</strong></h3>

Psychosomatic disorders are very real, significant, and need to be treated and taken seriously by the medical community, a leading expert in the area told the dotMD conference.

Irish-born Dr Suzanne O’Sullivan, a Consultant in Clinical Neurophysiology and Neurology at the National Hospital for Neurology and Neurosurgery, London, UK, has many years of expertise in working with patients with psychogenic disorders and her first book, <em>It’s All in Your Head: True Stories of Imaginary Illness</em>, was winner of the 2016 Wellcome Prize.

She asked why doctors are not more honest with patients regarding somatic disorders when it becomes clear there is no physical illness attributable to their symptoms; instead, patients are sent for more physical tests, which is expensive and harmful, she said.

Dr O’Sullivan said that in her unit, she can admit patients for a long period in order to assess their symptoms and seizures and “it is not uncommon at all” for her to tell someone who was diagnosed with epilepsy 10 years previously that they “don’t have epilepsy; they have dissociative seizures”.

<strong>Dr Suzanne O’Sullivan</strong>

“What I’m waiting to happen, which will never happen, is that they will go back to that original doctor and say, ‘why did you say I have epilepsy?’ There is no anger in mislabelling something as a disease; it’s perceived as the kind of mistake people can tolerate, but the opposite mistake is not tolerated. The consequence of that is that we are being constantly pushed towards making a diagnosis of things like epilepsy ‘just in case’ because we perceive that to be the biggest mistake to make — to miss that type of diagnosis.”

Dr O’Sullivan said that in tandem with this, patients “demand evidence” that they have a somatic disorder, while they do not seek such evidence if diagnosed with an “organic illness”.

She said that while there is a perception that dissociative seizures are less serious and less likely to cause mortality, they are “harder to treat, are more aggressive, more frequent and more problematic”.

To illustrate her point, Dr O’Sullivan stated that “25 per cent of people who go to the intensive care unit with status <em>epilepticus</em> actually have <em>pseudostatus epilepticus</em>”.

“If you have non-epileptic attacks, you will probably have dozens of attacks a week that will last longer. So in every sense, these seizures which are perceived to be less urgent are much more likely to destroy [your life], even if they are not as life-threatening. And the longer we go to make the diagnosis, the harder it is to reverse the diagnosis.”

She said telling the patient about the somatic diagnosis “is the first therapeutic step”.

“Within 24 hours of telling someone they have disassociate seizures, if you do it right, the seizures can disappear. Three months after telling them the diagnosis, even if you don’t refer them to a psychiatrist or a psychologist, the seizures will have gone into remission, so learning how to have that therapeutic conversation with somebody and presenting this diagnosis to them in a way that they can accept it is part of making them better.”

However, she stressed that somatic disorders need a multidisciplinary treatment approach — “they can’t just be diagnosed and the patient released”, as there are physical and psychological issues that need to be addressed.

Dr O’Sullivan imparted a number of pearls of wisdom regarding somatic disorders during her presentation. She pointed out that it is normal to have physical responses to psychological events, a very basic example being a racing heart, or stomach issues due to a stressful situation. So physical illness from underlying psychological causes is a very real, common phenomenon.

However, she also noted that while people diagnosed with a somatic disorder “are more likely to have suffered significant abuse, 30 per cent of people with dissociative seizures have suffered sexual abuse; that means 70 per cent haven’t”. Thus, doctors should not fixate on patients having to admit to some trauma to explain the source of their symptoms.

Somatic disorders are also sustained by attention, and symptoms can improve/disappear when the patient is distracted.

Stigma around somatic disorders is a significant issue for both patients and doctors and this needs to be addressed, she stressed.

Dr O’Sullivan also called for medical schools to have more education on somatic disorders and for their treatment to be incorporated into medical training, stating that prompt diagnosis improves outcomes.

A full list of the speakers and videos of some of the talks at this year’s dotMD conference are available at www.dotmd.ie.