Redefining advance directives: Beyond paper to patient-centered care

As an emergency medicine physician, I've seen the pitfalls of advance directives (ADs) firsthand. While ADs promise patient autonomy, they often fall short in the chaotic landscape of medicine. Dr. Dan Morhaim's recent piece champions ADs as a safeguard against wrongful prolongation of life lawsuits and a means to ensure personalized end-of-life care, but there is a starkly different narrative unfolding within emergency rooms, hospitals and post acute facilities across the nation.

My clinical experience and TRIAD Patient Safety Research suggests that ADs, in their current form, are far from foolproof and at times harmful. In fact some ADs, while crafted with the intention to respect patient autonomy, often lead to complex legal and medical challenges that can, paradoxically, incite litigation rather than prevent it. It’s time they evolve to protect patients.

The fundamental issue with ADs is their presumed clarity and enforceability. In reality, these documents are frequently neither accessible in critical moments nor adaptable to the unpredictable nature of medical emergencies. They are static documents attempting to address dynamic situations. As such, the legal system sees an increasing number of cases where ADs are implemented yet families still resort to litigation, alleging that doctors wrongfully prolonged a loved one’s life. These cases demonstrate that ADs are catalysts for dispute when they should be solutions for consensus.

Moreover, the very concept of ADs relies on the assumption that there is a clear delineation between treating and not treating a terminal condition or end stage medical condition. But the question remains: when is a condition truly terminal? If an untreated urinary tract infection can lead to death, should an AD dictate natural death in such a treatable scenario? This simplistic view fails to recognize the nuances of medical care, where the line between allowing nature to take its course and actively managing a condition is often blurred.

Thus, while ADs are intended to serve as definitive guides to a patient's end-of-life wishes, they instead become mere guesses when a patient is unable to voice their preference. The solution lies not in the widespread adoption of ADs in their current state but to make them evolve further. The evolutionary step needed is to know what the patient actually wants and when. The TRIAD of fostering a more robust ongoing dialogue (between patients, healthcare providers, and families), combined with required documents such as AD’s and Patient safety tools such as patient to clinician video, can be the patient safety tool and evolutionary step needed to make the AD safe for patients who are either critically ill and desiring treatment vs when at end of life and wanting to allow the natural dying process.

To truly honor patient autonomy, we must ensure that ADs are not just checkboxes but living documents, revisited and revised regularly. It's troubling that only 22% of Americans have documented their end-of-life care wishes, with about 25% of White Americans, 22% of African Americans, 21% of Hispanics, and only a mere 7% of Asians having done so. This discrepancy highlights a systemic issue, particularly within minority communities, where there is a clear need for better engagement and trust in the healthcare system.

Dr. Morhaim rightly points out the potential for ADs to alleviate financial burdens by aligning end-of-life care with patient wishes, potentially curbing the substantial expenses incurred in the final months of life. However, this economic efficiency must not eclipse the individual's medical needs and personal values. ADs, while possibly cost-effective, run the risk of fostering a one-size-fits-all approach to end-of-life decisions. Our ultimate objective must remain to deliver compassionate, personalized care that honors each patient's unique life journey and respects their dignity in their final days.

It's time to evolve our understanding and implementation of ADs. We must ensure they are tools for clarity rather than confusion, and that they serve the best interests of patients across all backgrounds and circumstances. In order to avoid the inadvertent harm that ADs cause, we must also shift our focus from documenting preferences to engaging in meaningful conversations combined with safeguards (patient safety tools). Only through this active engagement can we ensure that the care provided aligns with the patient's values and the complex realities of modern medicine.

Ferdinando Mirarchi, D.O., is the Chief Executive Officer and Chief Medical Officer of USACS MIDEO, LLC.