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Planning for the worst

It's every parent's worst nightmare: the call that comes in the middle of the night or interrupts a workday. It's the police or hospital calling to say that your child is in critical condition. As an emergency medicine physician, sometimes I have been the one to break such news, and it never gets easier.

Two years ago, a good friend received that call. A car accident had left her teenage son brain dead. At the heartbreaking memorial service, my friend shared the bittersweet comfort she and her family derived knowing that a part of her son lived on in the many people he helped through the donation of his organs.

Some parents don't even get to have that comfort.

I didn't know Nathan Krasnopoler, a Johns Hopkins University sophomore who died when he was only 20, but as the only physician in the Maryland legislature, I came to know his family well.

Nathan was riding his bicycle near campus when a turning motorist hit him and trapped him under her car. A helmet protected Nathan's head, but his lungs collapsed, depriving him of oxygen for 15-20 minutes. Despite the best of care, Nathan was left unable to move his body, react to sound, or have any awareness. His neurological exams showed only the most primitive brain stem functions. Until he died six months later, Nathan existed in a persistent vegetative state.

Like most 20-year olds, Nathan did not have an advance directive, but the law designated his parents to be his health care surrogates, able to make medical decisions in his best interest.

Faced with the inevitable and knowing Nathan's character and values, his family believed he would have wanted something positive to emerge from his tragic situation. Donations of nonvital organs — especially a kidney or lobe of the liver — are more successful when taken from a living donor. In fact, people make this voluntary gift every day.

But because Nathan had left no specific advance directive, the transplant and ethics committees at both the University of Maryland and Johns Hopkins hospitals declined Nathan's family's offer. Although his parents had the authority to refuse life-sustaining treatment, they were deemed unable to authorize organ donation because the committees could not certify that organ donation surgery — even though a low-risk procedure — was in Nathan's "best interest."

After Nathan's death, his family approached me to offer legislation that would allow health care surrogates to permit nonvital organ donation from patients in a persistent vegetative state. I agreed and drafted House Bill 449.

While Nathan's mother and brother gave compelling testimony at the bill hearing, the opposition focused on the fact that Nathan had not designated his wishes. Some feared this would open the door to disabled people becoming unwilling and unknowing organ donors. Without specific patient direction, there is no way to be certain what an individual would want.

Because of these concerns, it became clear the bill would not pass. However, there were important lessons to be learned from Nathan's case.

We Americans cherish our freedom of choice. In light of our ardent individualism, it's puzzling that so few of us make decisions about something almost all of us will face: medical care at the end of our lives. Only about a third of Americans have completed advance directive forms, even though the forms are straightforward, free and legal in every state.

While we generally think of an advance directive as a responsibility of the elderly, it is just as essential for younger people. The leading cause of death in those under 35 is accidents and injuries that can trigger complex medical situations (remember Terri Schiavo?), including potential organ donation.

Thanks to medical progress, people are surviving many diseases and injuries that used to be fatal. Those like Nathan, who a few years ago might have died at the accident scene, are now often saved. The luckier ones recover, but others continue in a limbo state for months or years. As medical technology continues to advance, cases like Nathan's will become more common.

Who should make decisions about what care is appropriate? Government? Insurance companies? Doctors? Ethics committees? My belief is that the patient's values should prevail. And when the patient is no longer conscious or competent, the only way to apply those values is through an advance directive and designated health care agent.

As a physician, my goal is to provide accurate information to patients. As an elected representative, I want to be sure citizens know their rights. But if people haven't expressed their wishes, controversy and family upheaval ensues.

While end-of-life choices are difficult to contemplate, completing the advance directive form will bring peace of mind. And in the unfortunate event that the form becomes legally operative, it will bring comfort and reassurance to those we love.

Advance directives should become an ordinary paperwork task, as routine as renewing a driver's license or filing a tax return. Health care providers need to encourage patients to complete advance directives, no matter their age, and to apply them when they become necessary.

Nathan Krasnopoler went to his grave with organs that might have saved several lives. (Because he was not on a respirator, his precise time of death could not be predicted, so his organs could not be donated.) But if Nathan's experience helps to ensure that more people — old and young — complete advance directives, then he will have made a significant contribution after all.

Dr. Dan Morhaim, is deputy majority leader in the Maryland House of Delegates, a faculty member at the Johns Hopkins Bloomberg School of Public Health, and author of the recently published book "The Better End: Surviving (and Dying) on Your Own Terms in Today's Modern Medical World" (www.thebetterend.com).

Copyright © 2015, The Baltimore Sun
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