My grandmother died feeling betrayed, frightened and utterly powerless in a bleak hospital room. She’d completed an advance directive about her end-of-life goals, preferences and values, including a do not resuscitate order (DNR). But when an emergency landed her in the hospital, the emergency room team ignored her advance directive and resuscitated her back to “life” just long enough for her to realize they had ignored her documented wishes. She died shortly after being resuscitated, but not before she let the healthcare team know she was angry.
Unfortunately, my grandmother is not alone in her life ending so tragically. In conversations with supporters of the end-of-life choice advocacy organization that I work for, Compassion & Choices, I often hear similar tales of an end-of-life healthcare system that has failed to meet their needs. Furthermore, there is increasing evidence that advance directives alone are not enough to ensure that people’s end-of-life goals, priorities and values are honored. Below are some of the shortcomings:
Lack of Participation: Only one in four Americans (23%) have an advance directive in place, according to a 2014 study in the American Journal of Preventive Medicine.
Lack of Coordination: The dying person and healthcare proxy often have not discussed the patient’s goals, preferences and values. In fact, fewer than 3 in 10 people have actually talked with their loved ones about end-of-life care, according to a survey conducted by the conversation project.
Lack of Relevance: Since advance directives are by definition written in advance — sometimes many years in advance — they often lack relevance to current events and decisions near the person’s end of life.
Lack of Access: It is an all-too-common scenario that the advance directive along with the DNR order is locked away in a desk or safe when a life-threatening emergency arises, leaving family members and medical providers unsure whether an advance directive even exists.
Lack of Enforcement: Doctors are not held accountable for following advance directives. Until they are enforced, physicians are unlikely to follow them because they are trained to do everything possible to keep a terminally ill person alive, regardless of whether the treatment only prolongs an agonizing dying process.
Federal policymakers need to address the growing demand for reform by passing legislation that advances the delivery of person-centered care. A good first step would be for Congress to pass the bipartisan Care Planning Act (S. 1549), sponsored by Senators Mark Warner (D-VA) and Johnny Isakson (R-GA). The legislation would require providers to include prominently in the patient’s medical record the content of an advance directive. In addition, the bill gives patients the option of signing a “portable treatment order” to give providers specific instructions about patient preferences in receiving care. Medicare-certified providers would be obliged to comply with these orders in any care setting, including the home, that could stop unnecessary and unwanted medical treatments.
The bill also would require Medicare-certified healthcare providers to comply with a patient’s verbal and nonverbal treatment instructions. When a patient lacks decisional capacity, the provider must adhere to a patient’s advance directive. In the absence of a directive issued in the state where care is being provided, the provider must respect an advance directive signed by the patient in another state to facilitate the ease and adherence to advance directives across state lines.
If the Care Planning Act had been in effect when my grandmother was dying, it would have increased the likelihood that her end-of-life wishes were honored. It’s too late to help her now, but it is not too late to pass this legislation to ensure that we honor the end-of-life wishes of millions of Americans in the future.
Kimberly Callinan is chief program officer of Compassion & Choices, the nation’s largest end-of-life choice advocacy organization with 450,000 members nationwide. She holds a master’s degree in public policy from Georgetown University.