Affordable Care Act, Death Panels, and Personal Freedom

Article in the Huffington Post

July 17, 2012 | By: Dan Morhaim, M.D.

The Supreme Court's decision to uphold the Affordable Care Act (ACA) still leaves some big issues unresolved. One of the most significant is care at the end of life. Due to the manufactured uproar over so-called "death panels," the Obama administration abandoned the ACA's original provision for Medicare patients and their physicians to be reimbursed for discussions about end-of-life care. Ironically, the Republicans supported the 2003 law that currently provides for such discussions when the patient is deemed to be near the end of life, but they opposed it when the ACA sought to extend the provision to allow for discussion before a patient is diagnosed with a terminal illness. Finally, in the interests of overall ACA passage, the expansion provision was dropped. Yet the best time to have this discussion is long before the need arises. The worst time is in the face of a medical crisis. The clinical issue remains and will not go away.

As an emergency room doctor, I've seen the following all too often. An ambulance brings in a frail, elderly nursing home patient with shortness of breath, irregular heartbeat, and plunging blood pressure. The wasted and contracted limbs indicate years of incapacitation, and the medical record reveals a long history of dementia. As we work to restore stability, probing paper-thin skin for a vein, the patient suddenly goes into cardiac arrest.

Does the patient have an Advance Directive or a Do Not Resuscitate (DNR) order? The answer is no. And so the ER team goes into full CPR mode, cracking brittle ribs with each chest compression. If "successful," the patient will endure pain and confusion that may last for the rest of his or her life.

Is this care? Or is it something closer to torture? The only ethical and legal way to avoid this scenario is when patients have made their wishes known in advance and appointed someone they trust to make decisions when they are no longer able to.

There comes a time when most of us would choose to allow a natural death rather than use medical technology to prolong life for what is usually only a few extra hours, days, or weeks. But when that moment comes, we are often not in a position to speak for ourselves.

Americans cherish the right to make their own medical decisions. In light of our ardent individualism, it's puzzling that so few of us exercise this right when it comes to something most of us will face: medical care at the end of our lives. A study out of Johns Hopkins Bloomberg School of Public Health Department of Health Policy and Management showed only about one-third of Marylanders have completed advance directives, even though these forms are free, straightforward, easily available, and legal in every state. Advance directives empower individuals to manage the final chapter of life in a dignified manner and according to their own values.

These forms, which allow you to specify the kind of care you want as you approach the end of life, offer something rare and important in our modern medical system: an opportunity to exert influence. As the baby boom generation reaches its senior years, as new lifesaving medical treatments are announced almost weekly, and as our health care system confronts a crisis of affordability, the need is urgent for everyone to demand participation in end-of-life decisions.

While cost is not the primary reason to have an advance directive, saving money is one of its consequences. Medicare estimates that 25-30 percent of its expenditures are for care given during the last six months of life. The costs to Medicaid programs and private insurance are equally staggering.

But we know that too much of this "care" is futile, hurtful, and wasteful. While some will opt to "do everything" no matter how painful the treatment or how unlikely the chance for recovery, most people do not want to die in this manner.

Advances in medical technology are truly miraculous, and we are reaping their benefits through longer and healthier life spans. But the end comes for everyone, and today more and more Americans are choosing to die at home or in hospice, surrounded by their loved ones. The medical and legal systems need to be prepared to support that choice.

Care at the end of life raises some deeply personal choices. Who should make them? Doctors? Government? Insurance companies? Hospitals? Ethics committees? Religious institutions? As both a physician and a legislator, I believe that the operative values should be the patient's. And the only way to ensure that outcome is through advance directives. When patients haven't expressed their wishes or designated someone who can act for them if they're incapacitated, controversy and painful family upheaval can ensue.

Completing advance directives should become as routine as renewing your driver's license or filing a tax return. If advance directives were to become the norm -- if say, 80 percent of adult Americans had them -- we'd be offering more personalized and humane care for far less money. Respecting individual rights is the right way to reduce health care costs.