We Americans pride ourselves on our freedom of choice. We value our right to make personal decisions about our lives and our families.
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ACEP News: Vol 31 – No 03 – March 2012In light of this ardent individualism, it might seem puzzling that so few of us make decisions about something we will all face: medical care at the end of our lives. In fact, studies show that only about a third of Americans have completed advance directive forms, even though the forms are free and have been legal in every state for decades.
As providers of emergency medical care, we have a special obligation to spread the word. Advance directives should be an ordinary paperwork task, as normal as applying for a driver’s license. And it should become routine for health care providers to ask our patients for their advance directives and to apply them when they become necessary.
More and more of emergency medicine has become geriatrics, as people older than 70 have become an increasingly large portion of the population. When I started practicing 30 years ago, it was a big deal when a 90-year-old patient showed up, let alone one over 100 years old. Now that’s fairly common, and it will become even more so as the baby boom generation hits their 70s, 80s, 90s, and 100s. Thanks to medical and public health progress, people are now surviving diseases that used to be fatal. We often see patients who have made it through two cancers and a heart attack and are doing fine.
While our population is aging and taking greater advantage of medical treatment, America’s health care costs are rising. When pundits speak of “bending the cost curve,” what they usually mean is they want to pay providers less to do more, delay payment as long as possible, and erect barriers to care. Health care has evolved – or devolved – into a system so complex that no one understands it. The latest trends in cost cutting, such as medical homes and accountable care organizations, have yet to prove themselves. And as many have pointed out, these new approaches are essentially reworkings of the HMO concept.
Whether the country moves to a single-payer system or a fully free-market every-person-for-themselves approach remains to be seen. But whatever the financial structure, there will not be enough money to go around if we don’t address the basic clinical drivers of health care costs.
One of these primary clinical drivers is care at the end of life. Medicare estimates that 25% of its expenditures are for care during the last 6 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. We’ve all seen and treated the 90-year-old, chronically demented, full-code patient with contractures, bedsores, urinary catheters, and feeding tubes who bounces back and forth between the nursing home and the emergency department several times, only to die a painful death in the ICU. Who wants to die like that, cut off from family and loved ones? More and more Americans will choose to die at home or in hospice, and we need to be prepared to support that.
Who should make the decisions about how much “care” is needed? Should it be government? Insurance companies? Hospitals? Doctors and nurses? Ethics committees? Religious institutions? My perspective is that the values that should be applied are the patient’s. I want to provide honest and accurate information, and then let the patient make the decision. But if patients haven’t expressed their wishes or designated someone who can act for them if they’re incapacitated, controversy and family upheaval often ensue.
By facing the realities of death and dying, we can make the choices that will allow us and our loved ones to find the “best of both worlds,” where life is prolonged and its inevitable end is as comfortable, conscious, and supported as possible.
Advance directives are not just for old people. The three most famous cases in American legal history concerned women under age 30 (Nancy Cruzan, Karen Quinlan, and Terry Schiavo). Every adult should complete an advance directive and update it as life’s circumstances change.
Let’s make it the mission of emergency medicine to complete our own advance directives, and let’s ask our friends, families, and patients to do the same. If advance directives were to become the norm – if say, 80% of 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.
Dr. Morhaim, FACEP, is a practicing physician, House Deputy Majority Leader in the Maryland State Legislature, faculty at the Johns Hopkins Bloomberg School of Public Health, and 2011 recipient of the AMA’s Nathan Davis Award for Public Service. His book “The Better End: Surviving (and Dying) on Your Own Terms in Today’s Modern Medical World” was recently published by Johns Hopkins University Press (www.thebetterend.com).
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