| What really happens when no clear documentation exists for incapacitated patients 

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| Ferdinando L. Mirarchi, DO 

There is a quiet shift happening in American healthcare—one that most people are unaware of until it is too late. It does not begin with a dramatic announcement or a breaking news alert. It happens in hospital conference rooms, ethics committees, and policy manuals. And it centers on a simple but profound question: Who will decide what happens to you when you cannot speak for yourself?

If your answer is “my family” or “my doctor,” you may be wrong.

Across the country, as our population rapidly ages and the prevalence of chronic illness increases, states and health systems are grappling with how to manage complex, high-stakes medical decisions for incapacitated patients. In response, laws and institutional policies are evolving—often in ways that shift decision-making away from patients and families when no clear documentation exists.

In plain terms: if you do not make your wishes known in advance, others will make them for you. I can assure you this will happen, as I have been in these meetings.

Today is National Healthcare Decisions Day

Some states are now enacting or considering frameworks that allow hospitals to convene panels—often ethics committees or designated decision-making groups—to determine whether life-sustaining treatment should be continued or withdrawn for patients who lack an advance directive or a clearly designated healthcare power of attorney. These panels are typically composed of clinicians, administrators, and sometimes community representatives. Their role is to interpret what they believe is in the “best interest” of the patient.

But let’s be honest: these are strangers and they could benefit from you not being alive.

These people or “panels” do not know you or your values. They do not understand your thresholds for acceptable quality of life. They have never sat at your dinner table, heard your fears, or shared your faith, your resilience, or your will to fight.

Yet by your not choosing to utilize your voice, they may become it.

At the same time, many hospital systems have implemented what are known as “futile care policies.” While the term may sound clinical, the implications are anything but. These policies allow physicians and hospitals to determine when continued life-sustaining treatment—such as mechanical ventilation, dialysis, or resuscitation—is deemed medically inappropriate or “non-beneficial.”

Once that determination is made, the hospital may initiate a process to withdraw or withhold those treatments—even over the objections of family members.

And here is the part that few people realize: if you disagree with that decision, your primary recourse may be to seek a court injunction. That means hiring legal counsel, navigating the court system under intense emotional distress, and racing against the clock to prevent the withdrawal of life support.

It is real and it is happening. These are not theoretical scenarios.

Families, already devastated by a loved one’s critical illness, find themselves in adversarial positions with the very institutions they trusted for care. They are now forced to fight—not just for treatment, but for time, for clarity, and for the chance to honor what they believe their loved one would have wanted.

All of this can be avoided. 

Many hospital systems utilize Advance Care Planning (ACP) to facilitate end-of-life conversations. But ACP should be the exact opposite. It should be planning how to thrive safely in life and allowing you to have control over how and when it naturally ends. You want to have control over the most important medical decisions you may ever face.

Completing an advance directive and designating a healthcare power of attorney are steps in the right direction, but it really does not end there. Standard advance directives are outdated, at times harmful and truly do not speak for you. They allow others to guess about your care. In the 21st century you have the ability to create those older state-based advance directives but then also supplement them with what MIDEO Health calls a patient to clinician video (PCV). 

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PCV ensures that you are seen, heard, and understood. This is especially important when you cannot speak for yourself. Combined with older style advance directives, PCV provides clear guidance to clinicians and removes uncertainty for your family. PCV also removes the guilt that families may struggle with; being able to see and hear exactly what you want leads to clarity of purpose. Most importantly, it prevents others—whether panels, committees, or institutions—from making deeply personal decisions on your behalf without knowing who you truly are.

Despite the importance of these measures, the majority of Americans have not completed advance directives or embraced what can be done with PCV. Many assume they have time. Others believe their family will “just know” what to do. Some avoid the conversation altogether because it feels uncomfortable or overwhelming. And if you make it just about death, then it is uncomfortable and overwhelming.

But avoiding the conversation does not prevent the decision from being needed or the critical event from happening. It only transfers the decision. And in today’s healthcare environment, that transfer may not land where you expect.

We are entering an era where medicine is increasingly complex, resources are increasingly strained, and policies are increasingly structured to guide decision-making in the absence of patient input. While many of these changes are well-intentioned, they underscore a critical reality: the system will not wait for you to decide. If you do not act, “the system” will act for you.

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This is not about fear—but it is about preparedness. Just as you would not leave your financial future to chance without a will or a plan, you should not leave your medical future undefined.

Have an advance care planning conversation. Don’t just put your wishes in writing. Utilize PCV and appoint someone you trust to speak on your behalf. And importantly, ensure that your decisions are accessible when they are needed most.

Because when the moment comes—and for many, it comes unexpectedly—the question will not be whether a decision needs to be made. The question will be: who gets to make it? And the answer to that question is that it should still be you.

Ferdinando L. Mirarchi, DO, built MIDEO from the TRIAD Patient Safety Research and from the years he worked as the medical director of the Emergency Department (ED) at a busy Trauma Center in PA.