Failure of Advanced Directives

An elderly gentleman with many comorbidities including advanced heart failure is sent from his nursing home to the emergency department for shortness of breath. He is intubated in the ER and sent to the ICU. Another older gentleman with metastatic cancer who was just discharged from the hospital presents again with shortness of breath and cough. He, too, requires intubation and then gets sent to the ICU.

In the next few days, I meet with family members of both patients. Both patients have, in fact, expressed to their children that they would not want heroic life saving interventions. They would not want to be machine dependent. They might not have even wanted to be intubated had they been given the choice. In one case, the patient arrived from the nursing home without any records; no one knew about his DNR order until his daughter arrived. In the second case, the patient had been discharged home from the hospital several days earlier and immediately filled out an advanced directive to be DNR, but had not had the chance to notarize it.

In both cases I met patients with such severe comorbidities that their quality and length of life was limited. They told family members they would not want intensive care interventions if they became acutely and devastatingly ill. Yet somehow, whether by fault of system or no one's fault at all, they were intubated, on pressors, and in the ICU. In both cases, after lengthy family conversations, we transitioned the patients to comfort care. They spent the last few hours of their lives in peace, but the preceding few days were fraught with unneeded intensive medical care.

This is not an unusual occurrence. Why does it happen? How can we have such a technologically and medically advanced society and yet not get someone's wishes about their end of life right? Part of it is the fragmentation of data; a nursing home or primary care doctor or kitchen magnet contains the necessary information, but it's not passed on where it's needed. An emergency medicine physician, in absence of better information, errs on the side of doing more. It takes days for family members to convene and agree that the right course of action is to let go. All in all, we are talking about a lot of unneeded suffering and medical waste.

This is a problem we must solve. It is not fair to patients - and one day, it will happen to us - to not have final wishes respected. Even an intervention as simple as a bracelet might avert unnecessary harm and cost. There's a lot of worry that unlike an allergy bracelet, a DNR bracelet might dissuade health professionals from taking care of a patient. But I argue that if we go around sticking tubes in people's throats, IVs in their necks, and electrical paddles on their chests against their will, we're not caring for them at all.