Advance directives to be included in the Shared Medical Records

In its report published Monday, March 14, 2016, the French Inspection Générale des Affaires Sociales (IGAS)1 suggests to involve family practitioners in having advance directives written by their patients and included in the shared medical records.  

This past Monday, March 14, the IGAS published its report entitled “Expertise on the ways of handling advance directives at the end of life”. This report was submitted to the Health Minister in October 2015; it was requested by the minister to have expert advice with a view to identify the best actors to administer the national register of advance directives, planned by Article 8 of the February 2, 2016 law on the end of life.

According to the text, « all adult individuals can write advance directives in case they become unable to express their will. These advance directives express the will of the person for the end of life regarding the conditions of continuation, limitation, stopping or refusing treatment or medical acts.” With this law, the advance directives become constraining: “the doctor is bound to them”, except in cases of life-threatening emergencies and “when the advance directives are obviously inappropriate or non-compliant with the medical situation”. Otherwise, the law provides that the advance directives be electronically saved “on a national register in compliance with the January 6, 1978 law # 78-17 related to data, files and freedom”.    

The IGAS recommends distinguishing two separate functions for the registry: on the one hand, information and advertising functions for the public and health professionals, and on the other hand, handling the registry.

For the first objective of information and adertising functions, the IGAS suggests confiding this role to the Centre National des Soins Palliatifs et de la Fin de CIe (CNSPFV) 2, created by decree last January and planned for in the national plan for palliative care 2015-2018. It brings together the teams from the National Observatory for the End of Life and the National Center of Resources for Palliative Care.

The IGAS also suggests giving family practitioners a central role in developing patient awareness and in helping them write advance directives. The IGAS considers that “the family practitioner is a professional with close ties, the most likely to lend his help to the patient.”

For handling the national registry, the IGAS examined several possible candidates, such as ABM (Agency of Biomedicine) or ADMD (the Association for the Right to Die in Dignity), who requested the creation of the registry and even asked to handle it. The Agency for Biomedicine was not chosen for ethical reasons and lack of competence. And the ADMD was not chosen either; the IGAS considers that its “active request for helping one die” does not respond to the neutrality required.

Finally, the IGAS suggests integrating the advance directives into the Shared Medical Records, planned by the January 26, 2016 Health Law and implemented by Health Insurance. According to the IGAS, “the Shared Medical Records is the most adapted tool to ensure at the least cost, the identification of patients, the preservation, and the security when interrogated”. And they conclude: “None of the other existing operators can do better, faster and at less cost.”

1French government audit, evaluation and inspection office for health, social security, social cohesion, employment and labour policies and organisations.

2National Center for Palliative Care and End of Life