An inconclusive diagnosis can be a distressing experience, creating on-going problems for both the patient and healthcare professionals. The time frame taken to try to reach a diagnosis can be lengthy. The necessary follow-up processes including referrals to other teams, ongoing assessments, repeat discharges, and re-referrals to other specialities all extend the time frame and result in an increase in anxiety for the patient. For health professionals, as the priority is the assessment and diagnosis of symptoms, there is little time or external support available to manage patient distress. As such, the levels of anxiety often result in practical consequences such as repeat attendance at healthcare services and A&E; and re-referrals due to DNAs (did not attends)/disengagement from services coupled with a renewed desire for a clear diagnosis as symptoms become emotionally and functionally disruptive.
UNDERSTANDING THE PROBLEM
The experience of living with an unknown diagnosis has been explored in the field of health psychology by Mishel’s Uncertainty in Illness Theory1 and the Reconceptualised Theory of Illness,2 as well as Stalnaker’s Conditionals Theory.3
Mishel1 states that uncertainty is part of any ill-health experience that is ambiguous, complex, and unpredictable. Mishel further suggests that the meaning patients give to these ambiguous circumstances is moderated by their subjective experiences of the initial trigger symptoms that lead them to the medical consultation; the perhaps unspoken interpretation they give to those symptoms; and the coping strategies they use to get through the process of assessment and diagnosis. To cope with the overall experience Mishel adds that the perspectives of self-organisation and probabilistic thinking, which address the uncertainty, lead to the development of a new value system, thereby reducing uncertainty and increasing clarity and therefore confidence for the patient.2
Stalnaker’s Conditionals Theory3 was originally developed to understand language/content of communication and related inferences and interpretations. Here, it allows us to understand how unconfirmed assumptions and inferences around ill-health conversations add to the confusion for the patient allowing greater room for misinterpretation of a given situation.
For example, at discharge, the healthcare professional may simply state: ‘I don’t think it is anything serious.’ which may be understood by the patient as ‘What if you missed something, a friend of mine had...’ resulting in a further hidden belief; the healthcare professional is not listening — I won’t bother again (until symptoms become a problem and I can no longer cope).
The example illustrates how the existing emotional vulnerability of the patient coupled with the lack of danger/threat (assumed by the doctor), which may not be shared by the patient, is likely to give rise to further, avoidable practical consequences.
RECOMMENDATIONS
Fortunately, the solution is not complex and may be managed at patient consultation stage. As follows:
acknowledge and validate the challenges for the patient in living with distressing symptoms, seeing numerous specialists and having no diagnosis;
neutralise the experience by reminding the patient that each experience is only part of a wider process and not the end for the patients care, though it may be the end of their relationship with that specific consultant/service;
check the emotional state of the patient and identify/remind patients of coping strategies; and
don’t offer false hope. The distress post-diagnosis, particularly if severe or terminal, is often heightened by assurances given by clinicians that there was nothing to worry about.
These steps would reduce patient distress, longer-term disruption to healthcare services, and minimise financial loss.
CONCLUSION
An inconclusive diagnosis can result in increased anxiety for patients, which can result in practical problems for healthcare services. Acknowledging the patient’s experience during this process may go some way to managing the problem.
- © British Journal of General Practice 2020
