Die the way you want to

Advance care directives should be as routine as driver's licences

June 1, 2012 | Dr. Dan Morhaim 

As an emergency room doctor, I've seen this 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 intensely 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 order? No. 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, however short or long that may be.

Is this care, or 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 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 this 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. Only about one-third of the general population has completed advance directives, even though these forms are free, straightforward, easily available and legal in every state.

There is considerable state-by-state variation. A Pennsylvania Medical Society survey showed that fewer than 20 percent of Pennsylvania adults have prepared an advance health care directive. To help, the society offers forms and instructions

Advance directives empower individuals to manage the final chapter of life in a dignified manner true 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 percent of its expenditures are for care in 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 unlikely the chance for recovery, most people do not want to die this way.

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 loved ones. Medical and legal systems need 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 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. Who can forget the tragic story of Terri Schiavo, the Florida woman whose family was torn apart as she succumbed to irreversible brain damage in 2005?

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 thing to do -- and the right way to reduce health care costs.

Dan Morhaim is a physician, Maryland state legislator, professor at Johns Hopkins University and author of "The Better End: Surviving (and Dying) on Your Own Terms in Today's Modern Medical World."

From the
Pittsburgh Post-Gazette