A Doctor's tale

Listening to ‘The Tales Patients Tell’

 

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Listening to ‘The Tales Patients Tell’

Picture from:Abraham-leon-kroll-the-conversation-natl-academy-nyc-1920

When the ghost of a dissipated life appears at the stroke of midnight, and demands that I explain the most important lesson that I have learnt during my many years of clinical practice, the one I would wish to pass on to the next generation of doctors, I have only one answer: “First, last and always, listen to the patient”.

I myself have a chronic illness, and as an immunologist, I primarily look after patients with long-standing ill-health, due to rare, ‘orphan’ illnesses. Such patients become ‘experts’ on their condition and are more knowledgeable about their condition than most doctors and healthcare workers who look after them. From my perspective, the ‘expert patient’ is a joy to deal with. However. an all too common reaction to them, when ill, by doctors, and dare I say nurses, is to sigh and give them a look that conveys, “Now I’m the medical professional and I know what’s best for you, and you be a good boy or girl and pipe down.” Thus, many a medical ‘misadventure’ is born.

The importance of listening to the patient is one of the skills I learnt very early on, as a medical student and young doctor. I was deeply impressed by a lecture given at the end of his career by a physician par excellence, Professor Rajasuriya, called ‘The Tales that Patients Tell’, about the value of a carefully taken history. This lesson was seared into the medical toolbox within my brain, as a young intern doctor. 

I was working the professorial medical unit as a house officer, and my co-house officer was Sarath Gamini, who went on to become an eminent physician. The ward was located in a long rectangular building, with half parapet walls surrounding it; a design aimed at providing ventilation to mitigate tropical heat and humidity. At any one time, the ward housed about a hundred patients. Sarath Gamini and I were doing the early morning ward round one Sunday morning, following the intake of patients presenting at the hospital emergency department the previous night. On such ‘casualty intake’ days, about 50 patients were newly admitted during the night, to be dealt with by two rookie doctors. We were working systematically, to review the patients under a priority system based on the severity of their attending complaint, to get ready for the ‘post-take’ morning ward round, by the consultant on-call.

We were working at the head of the ward, reviewing the patients in the beds just inside the parapet wall. Those judged to be less ill were either standing or seated or lying on mats on the verandah outside the parapet wall. A young man in his early 20s kept complaining that he was feeling ill, and had chest pain, and insisting that he be seen first. My co-houseman told him that being a young man, he was unlikely to have a serious heart condition; there were many people who were older and sicker than he was, and he must wait his turn. The man kept complaining bitterly and then in slow motion collapsed to the floor. We thought he was malingering, but he had had a cardiac arrest and could not be resuscitated. A post-mortem was refused by his folk, so we never found out the cause of death. Every time I get ‘irritated’ by a ‘know -all’ patient, this incident flashes in front of my eyes.

Some of the most astute diagnoses and patient management decisions that I have made were as a result of listening to the patient before me. Recently, I was consulted by a 47 year old lady, who told me that she had an ‘immunodeficiency’ and developed serious repeated infections, but that no one believed her, as her blood inflammatory markers were never raised (CRP, ESR, CBC). She had a history of dental abscesses, skin infections after minor trauma, complicated typhoid fever when living in South Africa, urinary sepsis and lung infections, but her inflammatory marker called C-reactive protein (CRP), which is typically raised during bacterial infections, was never elevated. She showed me a graph of her CRP, which only reached 22 (normal <4 20="" a="" africa="" an="" and="" at="" bacterial="" been="" blinking.="" but="" can="" canada="" cell="" crp="" defect="" deficiency="" detecting="" diagnosed="" did="" div="" due="" during="" episode="" examples="" for="" genetic="" give="" go="" had="" her="" hundreds.="" i="" immune="" in="" innate="" into="" it="" nbsp="" not="" of="" patterns="" pneumonia.="" pneumonia="" proven="" rare="" receptors="" s="" seen="" she="" south="" specialists="" such="" the="" till="" to="" took="" uk="" usa="" wall="" when="" where="" without="" word.="" work.="" you="">

Another example is a lovely young lady, who had a long-standing rheumatic disease, which had been treated with drugs that suppress the immune system. These, in turn, made her unable to synthesize proteins called immunoglobulins, also known as antibodies, which are needed to protect her from bacterial infections. She was troubled by recurrent infections, until we initiated treatment by replacing the immunoglobulin that she lacked, by intravenous injection of concentrated immunoglobulin, prepared from the blood of healthy donors: a product called intravenous immunoglobulin. She used to attend the day case ward of our hospital, every 3 to 4 weeks, to receive an immunoglobulin infusion over 3 to 4 hours. This practice is resource intensive for the National Health Service and ties the patient to attend hospital every 3 to 4 weeks. This method is increasingly replaced by giving an alternative product called subcutaneous immunoglobulin, which the patient can be taught to self-administer, at home, by injecting it under the skin.

I saw this lady in my clinic for a routine review. She was doing well; the consultation was short and uncomplicated. At the end of it, I asked her whether she had anything else to discuss. She hesitated, but I encouraged her to continue. She explained that coming to the day case ward allowed her to meet other patients with similar conditions, to socialise, and to exchange notes about the tribulations and triumphs of people with conditions like hers. This lady is a writer and poet. While on the ward, she met another patient receiving the same treatment, who was an accomplished and eminent author in his seventies. They started to compare notes about each other’s condition. The senior author, a poet, sent her his most recent poems for perusal; she, in turn, shared her blog, her memoir and short stories. They had a tempestuous, although sometimes exhilarating synergy, and they synchronised their treatment dates to facilitate their social interaction. The only venue they met at was the day case ward.

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As a physician, you have to look after a patient’s mental well-being as well as their physical health. I told her that we could agree that intravenous immunoglobulin, administered as a day case, was essential for her wellbeing, and that we did not need to further discuss transferring her treatment to use subcutaneous immunoglobulin. The status quo continued until the elderly writer passed on to the Valhalla that the souls of departed authors inhabit.

Another antibody deficient patient, in her mid-60s, was also receiving subcutaneous immunoglobulin. The serum is given as an injection under the skin of the tummy, or the upper thigh, and this results in swelling around the injection site. The swellings subside within about 48 hours and is well tolerated by most patients; it is the standard of care around the world. This lady had come for a routine review of her progress, and was brought to me by our specialist nurses, who informed me that everything was going swimmingly. I talked to the patient and was pleased to note that she was no longer troubled by the recurrent infections that predated her being treated with subcutaneous immunoglobulin replacement therapy. Again, before she left, I asked her whether she had anything that she would like to discuss. She took a deep breath and said that she suffered immensely from the subcutaneous injections. Her tummy would swell, the swelling was large and painful, and would not go down for over a week. Now this is unusual, and therefore I delved further into her story. It turned out that from her teens, she had developed marked swelling of her legs. Examination confirmed that she had a condition called lymphoedema, due to an inherited condition called Milroy’s disease. Lymphoedema is a condition where the fluid that exudes from the blood to nourish the tissues is not reabsorbed. The so-called interstitial fluid is normally reabsorbed by tiny vessels called lymphatics, which take it back into the bloodstream. If the lymphatics are not developed or blocked, the fluid remains in the tissues, causing swelling, or lymphoedema. If you inject subcutaneous immunoglobulin under the skin, it is absorbed into the bloodstream gradually over a day or so via the lymphatics. If the lymphatics don’t work, the subcutaneous immunoglobulin will not be absorbed and will cause a painful persistent lump. Q. E. D. (quod erat demonstrandum).

I informed the patient that I understood the problem, and that as subcutaneous immunoglobulin was not suitable for her, we would proceed to treat her with intravenous injections of immunoglobulin instead. I ended up with a happy patient.

The immune system can affect most of the systems of the body, and when colleagues in other disciplines are faced with patients who are puzzling, they often end up being referred to an immunologist. “This person baffles me, let’s see what the Immunologists think!”. Thus, a 50-year-old lady was referred to me by a haematologist, who did not think she had a blood disorder -her complaint was of fatigue, and a slight reduction in her white blood cell count. I investigated her thoroughly but was similarly puzzled. I took her history again. Her main problem was fatigue, which fluctuated in intensity. Coinciding with the zenith of her fatigue intensity, she noticed that her eyes became pale yellow, and her urine became dark. I did some simple tests to check whether she was destroying her own red blood cells, a condition called haemolysis. She indeed was, and had an underlying disorder, called paroxysmal nocturnal haemoglobinuria, caused by the surface change of some red blood cells. This change makes them susceptible to be lysed by components of her own immune system, called the complement system. When red cells are destroyed en masse, the red pigment is broken down to bile, which makes the eyes tinge yellow and the urine dark. There is a biological agent that blocks the complement system that destroys red blood cells, and this lady was initiated on this treatment, by a national scheme. When I saw her six months later, she was a new woman; the enervating fatigue, which had plagued her for 10 years was no more, and there was a spring in her step.

Another lady in her 30s was referred to me to exclude an underlying immunodeficiency; she had been admitted to hospital about 30 times in the previous 18 months, with proven sepsis, and no one could find out the source of the sepsis or what underlay her serious condition. Again, careful attention to history revealed that she had been troubled for several years by joint and muscle aches, a condition called fibromyalgia. She mitigated this by taking handfuls of a painkiller, called an NSAID, a nonsteroidal anti-inflammatory agent, as though she were eating Smarties. I enquired whether she felt pain in the upper part of her abdomen, an area called the epigastrium. Indeed, she was troubled by prostrating abdominal pain from time to time. A gastroenterologist then examined her stomach by passing a camera into it and found a large ulcer in her stomach lining. This was most likely caused by her intake of nonsteroidal anti-inflammatory agents, and she was advised to stop taking them. She was treated with ulcer healing drugs. The episodes of sepsis were due to ‘bugs’ from her stomach ulcer getting into her blood stream. When I saw her a year later, she was completely well, and had been free from any more hospital admissions with sepsis.

I think the curse of medical practice are doctors and nurses who don’t listen to patients and take what they say seriously. This is not to say that I have not come across factitious illnesses by people injecting themselves with contaminated stuff giving rise to infections and serious abscesses, or Munchausen’s by proxy, where parents manufacture illnesses in children to get enhanced social security payments, and hypochondriacs who imagine a whole range of symptoms and abnormalities, called a somatization disorder. 

Despite these exceptions, the main lesson I would like to pass on to the next generation of doctors is, “First, last and always, listen to the patient.”
The art of listening : By Leon Zernitsky: https://en.wikipedia.org/wiki/Leon_Zernitsky

With grateful Thanks to Shaista Tayabali, Editor and Korrektorin.