How should emergency care plans be shared?

It is an honour and a privilege to work with patients in improving PKB. The feedback they give is crucial, and the nuances still surprise me. The difficulty of understanding and implementing these nuances is why so many other efforts had failed in the past. But every fortnight, we release a new version of PKB that takes these nuances into account and improves the experience for patients and clinicians.

Yesterday I had a moving conversation with a mother about our upcoming emergency care plans feature.

The feature allows a patient to indicate part of the record that would be readily available in emergencies, especially when a patient is unconscious. We are working with bracelet manufacturers to incorporate PKB instructions into bracelets so that emergency service personnel can know how to access this part of the record. This approach maintains the safety of the patient during emergencies, while keeping the rest of the record encrypted and safe from unauthorized access.

The mother surprised me by asking that the emergency plan be kept secret from other clinicians looking after her son. This was because she wanted to store the advanced care directive for her son. She did not want his regular clinicians to know that he had such a directive as she worried that they would treat him differently. “My son’s ophthalmologist is brilliant, he gives him the best care. But I worry that if some doctors knew about the directive, they would expect my son to die soon, and thus not give care for the long-term. I want my son to have the best care regardless of his current health.”

As a father, it was sad for me to hear this, but as soon as she had said it I understood that she was right, and that I would want the same for my children. But this shows why patients have to be in control of the record. Such nuances are too many and too complex for any clinician to keep track of for any one patient, let alone all the different patients that he or she cares for.

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