Putting in Writing What You Want (and Don’t Want).

Early today we posted an article about health care reform by Lawrence J. Schneiderman, M.D, a Professor Emeritus at UCSD Medical School and Visiting Scholar in the Program in Medicine and Human Values at the California Pacific Medical Center in San Francisco. His new book, Embracing Our Mortality: Hard Choices in an Age of Medical Miracles, looks at end of life decisions from both the medical and philosophical perspectives and advises on how to best make tough decisions. In the excerpt below Schneiderman emphasizes the importance of communicating your end-of-life preferences.

One of my patients, Earl Adams (not his real name), an African-American in his late seventies, was afflicted with severe Parkinsonism. Not only could he no longer play the organ for Sunday church services, he could barely move and relied on his devoted wife for even the most basic needs. She got him out of bed in the morning, helped him to the toilet, bathed him, fed him, kept him upright during the day, and returned him to bed at night. So successful was she at these tasks that whenever she brought him to see me he was always clean-shaven and meticulously dressed, complete with jacket and tie.

During one of his visits, the three of us discussed his future treatment wishes if, as was inevitable, he reached a state of complete immobility. Should we insert a feeding tube if he no longer could swallow? Aggressively treat pneumonia with antibiotics, intubation, and mechanical ventilation? Or instead accept it as his terminal pneumonia (what experienced physicians have long called ‘‘the old man’s friend’’) and make sure he dies comfortably? What did he want us to do if he had a catastrophic event like a heart attack? Did he want us to attempt cardiopulmonary resuscitation (CPR)? Place him on a cardiac monitor and, if necessary, a cardiac pacemaker?

These were the kinds of questions I already had begun asking my elderly patients long before the federal government enacted the Patient Self-Determination Act. This Act requires that all hospitals and institutions certified by Medicare or Medicaid inform their patients about the availability of advance directives and the patients’ legal right to accept or refuse medical treatment.

I would explain that I wanted to know whether they had any treatment preferences they would like to inform me about in case they became very sick and were unable to participate in future decision-making. Rather than looks of outrage that I would dare suggest they might not live forever, I was answered with outbursts of relief. ‘‘Thank goodness you asked me,’’ was the general response. Then they implored that they be allowed to die in peace and not be ‘‘hooked up’’ to machines. I wrote all their requests down in their medical records.

As I did for Mr. Adams. I recorded all his treatment preferences: comfort care only, no antibiotics, no ventilator, no tube feedings; in short, no aggressive life-sustaining treatments. All very well, except that the catastrophic event occurred while I was out of town for a week and he collapsed with a ruptured aortic aneurysm. This should have been his merciful death, except that Mrs. Adams panicked, dialed 911, and watched as her husband was hauled away in an ambulance—to another hospital.

All our preparations were for naught, all the carefully documented instructions reposed deep in the bowels of the medical record department—of another hospital. For a week Earl was rushed back and forth between the operating room and the Intensive Care Unit while his intimidated wife could only wring her hands helplessly.

The doctors ignored her feeble protests—they had a job to do—briskly attending to his many recurrent emergency complications. It was a week before Earl died and before I heard anything about it. I berated myself miserably, of course. What could I have done differently? There has to be a better way, a way for patients to ensure that their future treatment wishes are known and honored.

About the same time, in the mid-1980s, many other physicians began to express the same concerns. Surely, they reasoned, if persons can retain rights over their property after death and dispose of it with estate wills, patients should not lose their rights under informed consent law to decide what is done with their own bodies before they die. This line of reasoning gave rise to documents known as advance medical directives.5

Although the concept of advance medical directives is a relatively new development in medical practice, its origins can be traced back to the beginning of the last century in the form of informed consent law. Courts throughout the United States have consistently and repeatedly upheld the rights of patients to be active and informed participants in their own treatment plans and to refuse unwanted treatment.