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How to ensure agony is not the default option

When the American healthcare system is confronted with a gravely ill elderly patient, its default response is often to use high-tech medical devices such as ventilators, dialysis machines, and defibrillators to extend the patient’s life. The results of this technology-driven approach to end-of-life (EOL) care can be devastating to patients and their loved ones. It is too easy for a dying patient to fall into what I call the “death trap,” undergoing invasive, discomforting, and ultimately futile medical interventions at the end of life that trap the patient in an agonizing dying process.

These measures are frequently taken without patients and families fully comprehending their implications. Although many medical practitioners find this approach to EOL care deeply flawed, no one (so far) has been able to fix it.

Ensuring a doctor has the time to communicate with the patient or the patient’s surrogate at the end of life to ensure they understand the patient’s wishes is one way to begin dismantling the death trap.

Another is to ensure that there are consequences in cases where a provider has ignored a patient’s clearly outlined wishes. A “sentinel event” refers to making a medical error serious enough to be formally investigated by an independent peer group. Holding clinicians accountable by their peers for ignoring a patient’s advance directive could fundamentally change their approach to EOL care and save more patients from falling into the death trap. It is also a constructive approach to address this issue that avoids accusations of malpractice.

Limiting the inappropriate use of technology is another way to stop feeding the death trap. While the heart defibrillator and CPR fundamentally changed the practice of medicine, they helped create a default EOL care model that says if a life can be saved, save it—even if this means fending off a patient’s naturally occurring death for only a few more hours or days. Research has found that following CPR, no patients with metastatic cancer, acute stroke, sepsis, or pneumonia survived until discharge.

These findings helped bring about Do Not Resuscitate orders (DNRs), by which patients explicitly or by means of a surrogate elect in advance not to be revived if their heart stops as a part of the natural process of dying. DNRs can keep seriously ill patients from being kept alive to undergo possibly painful procedures with no chance of survival.

Inertia is a powerful force in these life and death situations, allowing the death trap to continue snaring terminally ill patients. The American healthcare system will continue to respond automatically to a dying patient with invasive, temporarily life-saving measures so long as our health care system continues to pay doctors and hospitals to provide these services and we do not object.

Doctors can and should help patients learn about their options. Since 2016, Medicare has encouraged primary care doctors to talk with their elderly or chronically ill patients about EOL care options by allowing physicians to bill for this service.

So far, only a handful of doctors have taken advantage of this modest reform. As a result, many of the people who could benefit the most from such educational efforts, our country’s aging seniors, remain ignorant of their EOL care options and thus vulnerable to the death trap.

The default model for providing EOL care in this country is dysfunctional and in need of urgent reform. Shifting the current paradigm away from “keeping us alive at all costs” toward an emphasis on easing our exit from the world through comfort care will not be easy. It will take aggressive advocacy by reformers and an unprecedented level of cooperation among the major stakeholders in the American healthcare system to make it happen.

We can begin by transforming the default care model one individual at a time. We can avoid falling into the death trap by:

  • Understanding what options are available to us, such as a natural death aided by palliative -- or comfort -- care and hospice care services

  • Choosing the nature of our death and the limits of the EOL care we wish to receive

  • Formalizing our wishes in an advance directive and encouraging those we care about to do the same

Through such individual efforts we can save ourselves from the death trap.

In upcoming blogs, I will continue to address how individuals and families can find a better path on this journey and also address how our policymakers can reform EOL care to improve the healthcare system in this country.

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