Time to change

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Recent conversations with some family members, sorting through the nuances of a positive NIPT screening test and the subsequent termination of pregnancy due to life-incompatible deformities were quite challenging and confusing. The conversations were mostly about their interactions with health care professionals and their processing of information. Given below are a few observations from my reflections on these conversations.

The power equations in health care: we as health care professionals can no longer live with the power of our knowledge. We have for centuries lived with the power that comes from our knowledge. We are experts because we think we have more knowledge than the average human being (which might be true), and this gives us power over "them." We need to move from this knowledge- and expertise-based power equation and recognise that we are co-experts working together to find the best solution. The family and the patient are experts in what they want and know what is best, and we as health care professionals have been trained and given knowledge so that we can support them in their journey of wellbeing and fullness.

The dependence on technology as the answer: Technology, bio-medical markers, scans, and other radiology tests are now seen as the final answer. We need to use technology, but at the same time we need to see technology as supportive of the clinical context and what the patients’ perspectives are. Technology is required and good, but it comes with its challenges too. We should be well educated in the specificity and sensitivity, the false negatives and positives, the observer variability, the costs involved, etc. This must be considered before options are discussed with the patient, and that should be communicated too.

Speaking the truth: the truth has to be spoken, but it has to be spoken with clarity and succinctness, and at the same time, with compassion. The truth has to be spoken, recognising that the value systems that the family might be holding may be much different from the value systems we as professionals hold. Technical conversations should be detached from the value systems, but as these lead to points of decision, the family should be helped to consider the choices based on their value systems or gently guided into thinking issues through a life-preserving value system at the same time, recognising the complexity around all these decisions.

Trustworthiness of health care professionals: Currently, the various clinical decision options come out of a ‘defensive medicine’ we practise today. Even though I know there is only a small chance that the outcome will be negative, I must communicate the worst-case scenario in order to protect myself. We need to redeem the mutually compassionate journey of yesteryear, when doctors were vulnerable in communicating that they did not know everything. And by being such vulnerable providers, earn back the trust we have lost. As William Osler said, "Medicine is the science of uncertainty and the art of probability." This remains true even today, in the technological age.

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