Rare Opportunity to Control the End of Life
February 2, 2012 | Dan Morhaim
Every emergency physician and nurse knows this patient. An elderly woman is transferred from a nursing home, chronically ill with contractures, bedsores, and dementia. She is connected to a feeding tube and a urinary catheter, and she has been back and forth between the nursing home and the ED a few times.
The current transfer began as a request for evaluation of mental status change and low-grade fever. But by the time she arrives, she's a full code. Although resuscitation is successful, she'll eventually die in the ICU, connected to tubes and monitors.
An extreme presentation perhaps, but one that is becoming more frequent due to the booming senior population and the continuing progress of modern medicine. These situations present tough decisions for even the wisest and most compassionate among us. What is the best care we can offer our patients? When does it stop being a way to heal and relieve suffering and become simply a way to prolong a heartbeat and respiration? Who should make that decision? The government? Ethics committees? Faith communities? Families? Insurance companies?
The answer is actually straightforward. Individuals should make these decisions for themselves based on their own wishes and values. All it requires is an advance directive. This document, legal in every state, empowers individuals to determine the kind of care they want in critical situations or at the end of life, and to appoint a health care agent to make decisions if they are unable to do so for themselves.
Forms are available free of charge, and are simple to complete. Unfortunately, too few Americans take the time to do this. In fact, only about a third of Americans have completed an advance directive.
Why don't more people complete advance directives? I believe it's due to our culture's discomfort with death. Though we are exposed to more simulated death in movies, television, and video games than earlier generations, most of us have had less experience than our forebears in simply being with a dying loved one or even viewing their remains before they have been cosmeticized by the embalmer's art.
Yet it is vitally important for us to learn to overcome our denial of this simple biologic fact. Despite revolutionary advances in public health and medicine, the death rate in the United States remains the same as the poorest nation on earth: one per person.
Due to those medical advances, we find ourselves in a unique situation. We are the first generation in human history to have some say in how we die, to actively participate in our experience of death and dying.
Of course, this won't be true for all of us. Approximately 20 percent will suffer a sudden lethal stroke, coronary blockage, accident, or other trauma, but the overwhelming majority will succumb to illnesses that once were quickly fatal but are now treatable: cancer, heart ailments, and degenerative diseases. And for most of us, while the exact moment of death is uncertain, generally we can begin to define its circumstances.
We have a much better sense of what is happening and why as we face the end of life. We can approach death with a greater degree of consciousness and information than any of the billions of humans who preceded us. This gives us unprecedented control of how, when, and where we die. Instead of being buffeted entirely by the forces of nature, there is now a degree of self-determination in approaching our final passage.
This new encounter with the dying process mirrors changes in how we deal with that other universal human experience: childbirth. As medical science had more to offer, childbirth also saw an evolution from attendance by midwives at home to high-tech hospital deliveries managed by trained obstetrical surgeons. Infants and mothers who would have died in former times were saved, but the experience had become isolating for the mother and her family. The requirements of scientific efficiency came to dominate the spiritual and emotional values of simple human connection.
But over the past few decades, parents and medical professionals have demanded changes that re-humanize the process without sacrificing any health benefits. We now see fathers and significant others in the delivery room. Many hospitals provide homelike birthing centers and support for the laboring mother in the forms of nurse-midwives, birth coaches, and prenatal classes for both parents. This evolution is still underway, but it began and continues because ordinary people demanded the best of both worlds.
The need is urgent for ordinary people to demand participation in end-of-life decisions 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. An advance directive does not mean a diminution of care. It means getting care that respects one's values, ethics, and spiritual core. And it can be easily modified as our life circumstances and perspective change.
Most of us want the best of both worlds. We want everything that modern medicine has to offer, but we don't want to be kept alive if we are past any hope of recovery or function. And we don't want to die alone, cut off from family and friends, isolated in a hospital, serviced by doctors and staff who, while they may be superb technicians, are usually strangers to our families and us.
The primary reason to encourage advance directives is to promote humane values and respect patients' wishes, but any discussion about health care must also address the economic realities. Various estimates put end-of-life care at 25 percent of Medicare expenditures. The costs to Medicaid and private insurance are staggering as well. Those of us on the front lines witness these costs daily. Money will be saved in the system if expensive, futile, and often painful “care” is foregone. But it will be saved the right way: by respecting the wishes of individual patients, not by paying providers less to do more or by erecting barriers for patients to obtain needed care.
Advance directives are not only important for “old people,” though they most often come into play for those in the second half of life. The three most famous end-of-life cases in American legal history involved women under 30: Karen Quinlan, Nancy Cruzan, and Terry Schiavo. Mortal illness or accident striking the young makes the decision even more wrenching and legally complex.
Opening our eyes to the end of life that awaits us all has its benefits. Religious sages down the centuries have taught that contemplating their own death unlocked the path to spiritual awakening, and their wisdom is echoed by modern psychologists and philosophers. The end of life has inspired sublime poetry and art, and of course, our families benefit financially through estate planning and life insurance policies.
When death can be delayed for decades through medical science, there is a further crucial benefit. Looking at the realities of death and dying allows us to make choices that help us and our loved ones to find that best of both worlds where life is prolonged, and its inevitable end is as comfortable, conscious, and supported as possible.
Advance directives offer something rare and important in our modern medical system. It's an opportunity to exert influence, an empowerment that is often comforting. It's like being at sea in a small boat. You can't control the weather and waves, but it's good to have a rudder with which to guide your course.
Dr. Morhaim, a practicing physician, is the House Deputy Majority Leader in the Maryland State Legislature, faculty at the Johns Hopkins Bloomberg School of Public Health, and the 2011 recipient of the AMA's Nathan Davis Award for Public Service. The Better End is available from Hopkins University Press at http://www.press.jhu.eduand at http://www.thebetterend.com.
© 2012 Lippincott Williams & Wilkins, Inc.
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