The limits of kindness: a patient with ‘pseudo’ seizures

From The Iconographie photographique de la Salpêtrière, 1876-80. Photos of patients of Dr. Jean-Martin Charcot (1925-1893), the ‘father of neurology’.

Twelve years ago. A hospital at night.

9PM, and the night shift has started. My raggedy handover list contains many jobs; patients to review, “sickies” to keep an eye on, a chest drain to perform. At 9.30PM the bleep goes off – ‘fast’ bleep. Not a full crash call, but I need to rush. The night is young and there is energy in my legs so I sprint up the stairs. Level 8, turn right, rush in to the ward. I see movement behind partially drawn curtains, hear the anxious tones of a nurse. I slip into the bay and see a young woman fitting. A classic epileptic seizure. Her teeth are rammed together. There is saliva at the corners of her mouth. The muscles of her back spasm rhythmically.

“How long has this been going on for?” I ask.

“Five minutes, we gave rectal diazepam.”

Good. A good start. I look at the oxygen saturation monitor. 98% – excellent. The nursing staff have done a great job, there is an oxygen mask on the patient’s face. The eyes are closed. I wait to see if the diazepam will have the desired effect of calming those over-excited, frantically firing neurons. But it goes on.

“Give another,” I say. “Let’s give it intravenously this time.”

Another 5 minutes pass. This is getting serious. A more junior doctor comes into the bay. He has a perplexed look about him.

“Do you know this patient?” I say.

“Yes. She pseudo.”

I pause. “This is a pseudoseizure?”

“Probably. I think so.”

“How long she been in hospital? How often does she do this?”

“I only met her yesterday. I think this is her third. She’s been doing it for a years, she’s got notes this thick.”

“How long do they usually last?”

“Few minutes, sometimes twenty.”

“You keep an eye on her, I want to read the notes.”

I go to the nurses’ station and open the 2-inch thick folder. It contains letters from neurologists, EEG reports, diplomatic language and couched terms. But there is no question, these fits are medically unexplained, psychogenic non-epileptic seizures (PNES). And that’s alright. Everybody has problems. I return to the bedside.

“How’s it going?”

“I think they’re calming down,” says the senior nurse.

And indeed, the strength of the spasms is reduced. She must be getting tired, I think. I stand over her and look into the taut muscles of her face. She is flushed. I prise open an eyelid, hoping that by doing this she will see me and respond. The eyelid slams shut once I release my finger. I lean close to her ear and talk loudly, “Susan, Susan, can you hear me?” I know this is not useful. But I want to make a connection with the conscious mind I know is in there. We have been here nearly 25 minutes now, and I don’t want to give any more drugs.

“What do we do?” I say to the assembled staff members. But it is a silly question, because I am the most senior person there. I can’t leave her, she’s seizing. And I know that a reasonable proportion of patients with pseudo-seizures (yes, a pejorative term, but still widely used among non-experts) have a genuine underlying epileptic disorder. What if this is a real seizure? I’ve been watching it for half an hour now. This could be status. Lethal. She might need to go to intensive care, to be intubated, to be sedated, paralysed.

There is a groan. The movements settle. It is over. I make a hasty note, and move on. So much other stuff to do.

11:45 PM. Fast bleep. Same ward, but I do not expect it to be Susan. It is. The shift is still the right side of midnight, and I am still positive about life. This time I watch for a while, and hold off the sedatives. But the saturations are drifting down, and I don’t see or hear good inspirations. I am really worried that this is a true fit. Saturations are now 85; it is hard to do that voluntarily. But is any of this voluntary? At some level surely. I feel so useless in the face of extreme “functional” pathology. What experiences, stresses and terrors could result in a young person making themselves have what looks like a genuine epileptic fit?

After 10 minutes I relent, and we give a sedative intravenously. There is a gradual softening, slowing of the twitches. The saturations are good now. Another 20 minutes has passed. I do not have time to hang around while she regains the ability to communicate and talk. I can’t offer counselling overnight. I leave.

3 AM. The lowest hour. My brain craves sleep. In fact, I am sleeping, have been for 30 minutes on a couch that smelling of sweat and grime laid down over maybe thirty years. It’s probably full of fleas. That sleep has been interrupted by doctors from other teams coming in, making coffees, shaking cereal into loud bowls, slamming the fridge, but it is at least a form of rest.

Fast bleep, level 8: all the goodness that was in me has been left trailing in long, harshly lit corridors. I am now operating at a very basic human level. I will do whatever is necessary to preserve life, but little more. Soon I am standing over Susan again. I shout down at her, shout her name, try and shake her out of it. I don’t understand why the experts to whom she’s been referred haven’t done better, haven’t managed her so that she does not come into hospital and put on such a performance, demanding hours of care from nurses and doctors. Somebody has prepared the sedative, but I raise a hand.

“No point.” We watch and wait. I’m tempted to leave the ward, but I know that would be unacceptable. The nurses are rightly worried. How many hours until daylight? Four. So much could happen in that time. Between now and then I might be required to cardiovert someone, insert a central line, perform a lumbar puncture. I can’t be here right now. Why is she doing this? I open an eye and stare down into her pupil. I hope she can see me. If she can, she sees an inpatient, angry man. A man with smudges under his eyes and not an ounce of kindness. What will it take for me to show kindness now? A real disease. A patient who suffers through no action of their own. Not like Susan. She knows what she is doing.

It settles. She tires. I hope it is the last one. Next time, I won’t come to the ward. Nothing bad is going to happen.

*

After fresh air and bright sunlight had pushed away the fatigue and allowed the real me back in, I considered Susan’s plight. In considering her, I considered my reaction to her. The emotion I felt, a very negative emotion, was genuine. I felt like she was wasting my time. But I knew that she had no wish to be in hospital. I knew that the complex mixture of social and medical circumstances that led to her admission were not chosen. I knew also that the last person on earth likely to show kindness in that situation, will probably be the doctor who is asked to see her at 3 in the morning.

*

This recollection is an extreme case. The doctor loses patience with a patient who is suffering. How can that happen? Simply, the doctor starts to believe that the patient is doing it on purpose, even though he is educated enough, medically, to know full well that, in the words of U.S. expert Dr. Selim Benbadis, “PNES is a real condition that arises in response to real stressors. These seizures are not consciously produced and are not the patient’s fault.”

The ability of doctors to respond to ‘medically unexplained’ or ‘functional’ disease, or ‘somatization’ disorders, has been the subject of much investigation and discussion. Usually, the challenge is in the outpatient setting, or in the GP surgery. Every branch of medicine has its own set of disorders that cause significant suffering, but for which no physical explanation can be found. Depending on the type of doctor, their mood, or their specific interest, a patient may experience anything from a careful exploration of the circumstances to a brush off, along the lines of ‘there’s nothing physically wrong…’ i.e. – cliche alert – it’s all in the mind. Except the mind is the patient, and if the mind is driving symptoms, the symptoms are no less troublesome. At the same time, few doctors have the time or expertise to really get into the individual patient’s psychosocial background. Finding a middle way, many doctors develop a form of words to explain medically unexplained symptoms in a non-pejorative way. We describe the strong connections between mind and body, the primitive nerves, the gut-based feelings we all experience under stress, the habits our bodies have of developing unwelcome responses to life events… sympathetic, subtle and non-judgmental. Then we may refer to a super-specialist who has the gifts, or the supporting multi-disciplinary team, to alter the way the mind triggers somatic sensations. Because we know we are not the ones who can really help.

PNES is an extreme example, as I said, but it serves to illustrate that doctors have limits (especially at night), and not all are equipped to do justice to the patient without discernible physical illness.

***

Resources:

A neurologist’s personal view on how to approach functional neurological syndromes.

An approach to patients with “non-epileptic seizures”

Differentiating PNES from epileptic seizures

How do you identify and manage convulsive psychogenic non-epileptic seizures presenting acutely to casualty?

Cure: a journey into the science of mind over body [balanced book on the positive and healing effects mental strategies may have over physical illness]

 

 

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