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The professor's daughter

This is a highly condensed and edited version of a physician-father's account of his daughter's perilous treatment in a large, Western European hospital. It raises several major medical and treatment issues (which will not be dealt with here); serious questions about communication and quality of care; and shows some important aspects of the mindset of a patient.

The patient's mother, ex-wife of the physician-father, and a senior ICU nurse, was present throughout, and took an active part in all the observations and assessments, which, in this narrative, for the sake of simplicity, are attributed solely to the father.

Over the phone, my athletic, fit, three-months pregnant daughter, Monica, said she'd had chest pain for three days and was assuming it was an infection caught from her young son. I, anxious father, with past research in the area, immediately thought about the possibility of a pulmonary embolism (PE), though it was unusually early in pregnancy for one.

I strongly advised her to see her doctor, which she resisted, not wishing to bother her. She did go, however, and examination revealed no signs of venous thromboembolism (VTE).

A few days later Monica reported that the pain had been reducing, but had shifted and begun to worsen. She again indicated her reluctance to cause any trouble for her doctor. Two days later she fainted in a shop and, on my insistence, did go to her doctor, who immediately referred her to the large, local hospital, where they kept her overnight for observation.

I swiftly made my way to the hospital and was alarmed to hear that they were considering discharging her after the consultant ward-round, as they weren't sure she'd had a PE. On the other hand, they might consider anticoagulation if blood-tests suggested VTE.

The routine drip in her arm suggested seriousness, but more worrying to me was a greyness round her eyes, blue-tinged lips, overall pallor, and shallow, painful breathing. I knew she didn't like hospitals, and hated being ill, but that did not account for her frightened behaviour. Blood pressure and pulse were normal, but she had the cool, clammy skin and restless anxiety of the shocked patient. The previously comforting test result of normal blood oxygen level now looked doubtful in the light of her lip colour.

The doctors had told her they thought it most likely she had some myalgia-inducing virus infection, but they also thought a small PE was possible. An oxygen mask by her side suggested their view of the possibility of the latter.

When the consultant arrived he confirmed his view of the likelihood of a virus myalgia. He commented on the patient's good fortune in being admitted on a Thursday - the one day of the week when they did ventilation-perfusion testing. He said she would probably be home within a day or so, unless there was a small PE, in which case they would start anticoagulation. He said that a blood test which indicates the presence of abnormal blood clotting was positive, but that it was often falsely positive in pregnancy and they were discounting it.

The virus myalgia diagnosis simply did not fit with the patient I saw in front of me. Young people tolerate shock well, compensate and maintain blood pressure until compensation fails, then die quickly.

The consultant returned with the scans. He invited me to look at them with him. They showed about one third of one lung with evidence of blood flow - a quite exceptionally serious blockage.

'She's been on Heparin since last night,' the consultant remarked. Heparin would not affect the existing clot, nor stop a further clot in her leg from breaking off, with likely fatal effects; it would increase the risk of bleeding under the placenta and of abortion; it had to work perfectly if Monica were to have time to break down the PE herself.

They had considered fibrinolytic drugs, but rejected them on the basis of the risk of placental bleeding and abortion. The registrar, after telling Monica that she had only a small PE, if one at all, had added that a big PE would require fibronolytic therapy and the consequent loss of her baby.

After the PE was confirmed, anticoagulation was started. She was not told how serious her condition was, nor did I or the consultant answer honestly her question: 'I won't have an abortion, will I?'

I went out for a break, but was recalled by a breathless nurse. Monica was being taken to intensive care and wanted me with her. The senior cardiologist, asked for a second opinion, strongly recommended the fibrinolytic, Alteplase. Monica was terrified. The cardiologist examined her and judged that the need to have the PE lysed was inescapable. What about the baby? Checking with the drug information service and the manufacturer revealed that there was no experience of Alteplase use in pregnancy at all.

Monica's blood pressure was lower and her pulse rate raised. Was this fright or decompensating? What about the known risk of fibrinolytics causing bleeding?

After the Alteplase infusion was started, and during a restless and painful night, Monica asked: 'I'm not going to die am I?' No-one gave an honest answer about the risks, which Monica may well have recognised.

After a couple of hours, at about midnight, there was bleeding from the sites from which she had had blood taken, and around the IV infusion cannula. Her blood pressure appeared to be going down and her pulse rate up - the divergent lines called 'the jaws of death' by a previous colleague of mine.

While looking at the charts, I noticed that Heparin was still being infused along with the Alteplase, which I knew to be contraindicated. I asked the nurse if I could see the package insert for Alteplase: it was clear that the two drugs should not be given together. But it was too late: the Alteplase was finished and she would have been restarted on Heparin in any case.

The almost accidental discovery of a PE and this dangerous error in prescribing combined to deeply undermine my confidence in the doctors.

Recovery came in the small hours of the morning: pulse started to fall, blood pressure later started to rise, and colour came back to her skin. The first experimental use of Alteplase in pregnancy had passed without disaster.

Now she was feeling better, her chest pain was bothering her more. Some time later a nurse arrived with 'tablets for the pain'. I roused my tired brain and was shocked to see a particular non-steroidal anti-inflammatory (NSAID) drug belonging to a class that reduces blood platelet stickiness. All NSAIDS can lead to gastric ulcers and potential bleeding, especially in stressed ICU patients. NSAIDS were absolutely contraindicated in this situation.

Monica's analgesia was postponed while a frosty and indignant cardiologist quizzed me about my right to interfere with what he regarded as their 'routine' treatment, resisting my apologetic observation that there were written warnings about combining the drugs. He later criticised me for making the patient anxious and explained my lack of judgement with reference to the traumatic night I had spent at my daughter's bedside.

Without comment, he prescribed a more suitable painkiller and Monica was then further troubled by her uncertainty about whom to trust. The cardiologist had given her the impression that he changed drugs to humour me. I was able to find and show her the relevant manufacturers' leaflets which confirmed my view. But that did nothing for Monica's confidence in the medical team on whom she was going to have to rely for therapeutic guidance and decisions during the rest of her vulnerable pregnancy.

A bright and memorable spot in this dark tale, was the kindness, proficiency, compassion and attentiveness of the nurse who settled Monica into the ICU at that particularly alarming stage of events.

Questions

  1. What questions about clinical practice in this story do you feel need discussion? What was done badly? What was done well? What should have been done differently?
  2. What aspects of communication in this story give rise to concern? How were the issues of risk and telling the truth dealt with?
  3. How could the relationship with the patient's expert father (and mother, as it was in real life) have been conducted more positively and professionally?
  4. How would you characterise the behaviour and attitudes of the medical staff in this case? What do you feel were some of the personal and professional failings, and what could be their causes?

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