The Need to Go Beyond Advanced Directives
Every year across North America, 4 million people in an ICU are unable to make medical decisions for themselves, and half a million, newly diagnosed with neurodegenerative disease, will eventually become decisionally incapacitated.
Very few of these people are adequately prepared for this crisis. Even those that feel well equipped to handle these life altering situations still face impossibly difficult questions with very little time to react and reach decisions. Research shows that standard advance care planning is not very effective. Medical environments are designed to promote medical interventions even if this is not the stated wishes of the patient. Families that do have an advance care planning document in place still aren’t shielded from the emotional trauma of deciding on behalf of a loved one when there is much to consider and very little time. More than a third of all surrogates are diagnosed with clinically significant PTSD.
Advance directives in the current medical environment do not provide enough clarity, communication, support and direction. Millions of ordinary people are suffering because there has been no better alternative. At some point this will touch every family.