Explanation to a patient of the need for investigations

Case Scenario: You are a junior doctor working on a cardiology ward. Mr  ABC, aged 23 years,
has congenital heart disease. He was admitted from clinic for further investigations into the cause of his breathlessness. The view of the cardiac team is that it will not be possible to give best advice about prognosis and treatment without information from a cardiac catheterisation study, but he is refusing to consent.

Your task: is to determine what concerns Mr ABC has and explain the purpose of further investigation.

Key issues to explore

• First find out what the patient knows about his condition: he may be concerned that nothing can be done or be in denial about the seriousness of the problem. 
• Then establish what he knows about cardiac catheterisation and his fears about the procedure: some patients are worried about pain and discomfort, whereas others worry about complications. Try and put any such fears in perspective.
• Explain any alternative investigative strategies that are available, but also why a cardiac catheterisation study is needed to give him best advice about his condition. 
• If possible offer him information booklets and if there is a specialist nurse available, ask him or her to speak with the patient.

Key points to establish
The patient does not have to undergo any investigation or treatment unless he agrees to it. He will still receive care even if he does not undergo the investigations recommended, but a proper investigation may improve the care that can be given to him and thus alleviate some of his symptoms.

Appropriate responses to likely questions

Patient: I feel fine.
Doctor: I hear what you say, but you went to the doctor because your breathing isn’t as good as it should be and it looks as though this is due to a problem with your heart.


Patient: but the problem isn’t very bad.
Doctor: I know that things aren’t terrible at the moment, but we have found a problem with the heart that could be serious and which may get worse. It may be that treatment now can improve things so that they don’t get any worse, or the rate of any deterioration can be slowed down so that you will feel well for longer.

Patient: can you guarantee that the problem can be sorted?
Doctor: no, I’m afraid that I can’t. Until we know exactly what the problem is, we won’t be able to
tell you.

Patient: I still don’t like the idea of a cardiac catheter. Is there an alternative?
Doctor: yes, we can and will do scans that will give us some information. However, cardiac catheterisation gives us the most important information, such as the amount of oxygen in the chambers of the heart, which we cannot get in any other way. We wouldn’t recommend this if there were better alternatives.

Patient: will it hurt?
Doctor: the procedure may be uncomfortable while the local anesthetic is being given. This lasts a few minutes and after this it should not be uncomfortable.
It’s a bit like going to the dentist: the injection is unpleasant, but then things go numb.

Patient: could I die during the procedure?
Doctor: that’s very unlikely indeed. This is a routine procedure, although as you can imagine any procedure involving the heart carries a small risk, but it is very small. The risk of death is 1 in 4,000, which means that 3,999 survive out of 4,000 people undergoing the procedure.