A case of agonising choices

A woman in her late twenties was brought by ambulance to an emergency department with status epilepticus. She was given short-term emergency treatment and admitted. Her early pregnancy was recognised and obstetric examination showed that the foetus appeared to be undamaged.

Later discussion in the ward with her (confirmed by a phone call with her community physician) revealed that epilepsy had been diagnosed in her late teens and that she had been prescribed medication since that time. In her early twenties, Stevens-Johnson syndrome emerged as a side-effect of her medication, and the regimen was changed after she recovered. She had had no epileptic episodes for seven years, and no recurrence of Stevens-Johnson syndrome or other side effects.

Unknown to her doctor, two or three years after her recovery from Stevens-Johnson syndrome, she had started her own research about anti-epileptics, and had been so alarmed by what she read about the risks that she had discontinued all medication, while continuing to collect her repeat prescriptions, half-thinking (as she said) that she might resume when the balance of her fears returned to the risks of further fits. Events had planted in her a mistrust of doctors: she claimed the risks of anti-epileptics had never been explained to her. Now the issues were deeply complicated by the new risk that an epileptic fit, and the medication to prevent it, might represent for her unborn child.

The outpatient physician saw this woman several times after she was discharged, slowly taking her through the options which might manage her physical condition, protect the foetus and deal with her now multiplying fears. She was well-informed about anti-epileptics, cross-reactivity, foetal health, and so on, and was demanding in terms of the information she wanted about risk. When the obstetrician said, 'Another fit will certainly kill the baby,' she asked, 'How certainly?' When one after another of the available anti-epileptics was discussed, she asked, 'How likely is foetal damage or an allergic reaction?' What is the chance of this happening to me?

Not surprisingly, the physician was not able to provide effective solid evidence about anything which would completely allay her fears or even offer confident risk figures. None of the commonly-accepted drugs available for treatment was without some known risks for this patient.

Treatment

So: you may like to discuss the purely medical aspects of the treatment dilemmas in this case, and the best solution you would hope to negotiate with the patient. Those aspects of the case won't be dealt with here.

The communications challenges

Think, for a few moments, about the challenges presented by this case for any physician in the front line, and any nurse or pharmacist in the second line.

What knowledge and skills would you need to accompany this patient on her journey from a potentially life-threatening event for her and her unborn baby, to a solution she would find satisfactory?

Here are some thoughts:

Knowledge

In light of the extensive knowledge needed in such a case, and of the patient's own considerable knowledge - a willingness to admit ignorance or uncertainty, and to research information and answers where they are available; willingness to live with uncertainty, and to help the patient do so, when good evidence is not available. To work in partnership on this journey.

Actions and skills

• Empathy
  • A genuine grasp of this patient's unique trauma on her epilepsy diagnosis
  • A genuine grasp of this patient's unique trauma on suffering Stevens-Johnson syndrome from medication she did not know carried a risk of such serious harm
  • A genuine grasp of this patient's unique disillusionment with doctors and medicine and unquestioning acceptance of its authenticity
  • A genuine grasp of this patient's continuous, long-term agonising about her lifetime medication for events about which the risk and seriousness for her, individually, were unknown
  • A genuine grasp of this patient's unique feelings on surviving an event which was a serious threat to her life and that of her baby
  • A genuine grasp of this patient's unique feelings about current or future damage to her child, and the impact of even consideration of abortion
  • A genuine grasp of this patient's unique, painful dilemmas and competing needs in making treatment choices
  • A genuine grasp of this patient's unique need for facts, certainty and the re-establishment of her trust in healthcare
  • A genuine grasp of this patient's potentially negative reaction to transfer of her care to her previous community physician or any other
• Building the relationship
  • Establishing credibility by taking the patient's perspective seriously
  • Building trust by listening and moving at the patient's pace
  • Demonstrating trustworthiness by openly sharing uncertainty
  • Showing conscientiousness by offering a comprehensive range of genuine options
  • Demonstrating empathy, understanding, concern
• Explanation
  • Having all known information in mind or to hand, and providing as much as the patient needs, at a pace the patient can process
  • Providing supporting information (e.g. leaflets) and alternative sources (e.g. second opinion or internet )
  • With patient's permission, recommendation of physician's preferred option
• Risk communication
  • Being able to make sense of such risk information as is available and putting it into language exactly matching the patient's abilities and needs
  • Being able to weigh the evidence about different and inter-related risks and to make responsible judgements which can be represented plausibly to the patient 
  • Ability to moderate the patient's need for certainty and to investigate the levels of risk and uncertainty with which the patient is prepared to live
• Joint decision making
  • Arriving at a treatment decision which the patient understands, accepts and agrees to
• Planning
  • Reviewing risks, early warnings and action to be taken
  • Discussing future consultations and check-ups
  • Preparation for discontinuation of outpatient relationship and transfer to community physician or other (if relevant)