On Being a Patient |

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Jaya K. Rao, MD, MHS; and Venkatarama R. Koppaka, MD, PhD
[+] Article, Author, and Disclosure Information

Note: The Koppaka Family Foundation was created, in part, to foster a dialogue on the doctor–patient relationship. For more information on the visiting lectureship program, including application procedures, please contact the authors directly by mail or e-mail (koppaka@mindspring.com).

Requests for Single Reprints: Venkatarama R. Koppaka, MD, PhD, c/o Koppaka Family Foundation, PO Box 941251, Atlanta, GA 30341; e-mail, vrkoppaka@mindspring.com.

Current Author Addresses: Dr. Rao: 1005F Oak Chase Drive, Tucker, GA 30084.

Dr. Koppaka: 4906 West Franklin Street, Richmond, VA 23226-1220.

Ann Intern Med. 2002;137(10):852-854. doi:10.7326/0003-4819-137-10-200211190-00016
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He sold Indian vegetables at the local farmers market every weekend. At first glance, he seemed a distinguished older gentleman with a reserved manner and modest attire. The vegetables came from his farm, his refuge from everyday concerns. For the curious, who happened by his truck and inquired about the unusual vegetables so carefully displayed, he would provide a quick recipe. Never a money-making enterprise, the farmer's market represented another teaching venue for him. Every Saturday afternoon, he proudly told his children about the vegetables he sold and the people he met that morning.

His life story is familiar to some. This man grew up in poverty. He was the first in his village to obtain a doctorate degree and go to the United States for further study. By any measure, he was a success. A scientist who thoroughly enjoyed the process of research, he continued to work in the lab, write grants, and supervise graduate students well after he turned 70. He was also a pharmacy professor who had a life-long love for learning and teaching. A medicinal chemist, but not a doctor, he relished telling his children that medical school did not place enough emphasis on therapeutics. Often, they found themselves the preview audience for lectures on pharmacognosy, cancer chemotherapy, and folk medicine that he later gave to students in the school of pharmacy. This gentle man with indefatigable spirit was our father.

It happened during a winter weekend a few years ago. He was admitted to the local university hospital, said to be the best in the area. He had had strange chest sensations for several days. No one, not even his doctor, thought it could be his heart. After all, he still worked full-time in his lab, in the classroom, and on his farm every weekend. For all of his 72 years, he had been able to will illness away. But this time was different. The nagging discomfort would not pass, not with his special peppermint tea, not even with nitroglycerin. He called 911 in the early hours of that Sunday and walked, fully dressed, to the mailbox to meet the rescue squad. “It was a small anterior myocardial infarction,” the doctors said, “but he is an excellent bypass candidate.”

“You should just be his children and not doctors,” we were advised early on. We refrained from looking at his chart or the flow sheets. We looked away as his management was delegated to nurses and physician assistants who did not always know the plan. His surgeons were technically gifted; input from cardiologists and internists was not needed in their unit. The patients were managed according to protocols while the surgeons operated. “Surgical attendings just don't have time to talk to families,” the nurses explained, apologetically. This was a system that worked, usually.

Clinical pathways were of little use, 2 days post-op, for the agitated delirium and hypotension that accompanied rapid atrial fibrillation. How do we respond when the surgical fellow, overwhelmed, asks us for suggestions? How can we be his children when we are asked to be doctors? Fortune brought to the bedside an experienced surgical attending who ordered life-saving measures. Successfully extubated and weaned from the balloon pump several days later, the patient spoke with his wife and children once again. For a brief moment we felt confident that the battle could be won.

It was not meant to be.

Days later, his condition deteriorated, with falling cardiac output, frequent premature ventricular contractions, and hypoxia. Again agitated, he struggled to convey one last message. “2/20,” he scribbled. “Pay the bill, then you can go,” he said. “He has ICU psychosis,” we reassured our mother. Inside, we worried. The surgical fellow ordered sedation.

We knew it was bad when he coded twice that afternoon. The charge nurse tried to give us hope. “It was lucky that he was in the unit,” she said. But how can there be hope when we learn they used open cardiac massage to restart his heart? Harder still, how do we give hope to our mother, or to friends who look to us for words of wisdom and optimism? Yet we did hope, and we waited for the surgeons to talk with our mother. She had never met them and could not understand why they did not speak to her. To this day, she believes they did not care. We waited for words of encouragement from his doctors, but as they passed us in the hallway, they bowed their heads. They too felt helpless, so they avoided us. The nurses' apologies for the doctors' silence did little to ease our concern.

We were determined that he not suffer. His advance directive should have assured that. Our training told us that his prognosis worsened with each hour that he remained comatose. Another resuscitation would be futile, we reasoned. But where do we turn after the attending, in his only conversation with us, explains that he did not believe in “do not resuscitate” orders? Nurses interpret DNR orders as signs of hopelessness, and care will suffer, he asserted. He assured us that his nurses would “know what to do.” Why then, did the nurses ask us what they should do if he arrests? “Go slow,” we told them. We prayed that they would know what was right.

Two days later, it was clear that our father would not wake up. His mind, the basis of his brilliance, creativity, and curiosity, had been silenced. His eyes, once twinkling with life and a zest for knowledge, were now dull and unseeing. But how do we negotiate a dignified withdrawal of care with an attending who could not communicate with us? We were helped by a physician who cared. Once our professor, now our friend, he was never our father's doctor, yet he became his strongest advocate. With gentle expertise, this kind healer guided us, especially our mother, through this most difficult process.

A week after his cardiac arrest, our father eased our burden. He became hypotensive hours before we had planned to withdraw support. Though he was unresponsive, his breathing, consistent with brain injury, appeared labored. “Keep him comfortable,” we pled. The physician-assistant ordered a paralytic agent. Incredulous, we protested the use of a paralytic without sedation, demanding a narcotic instead. His doctors ordered intermittent meperidine without leeway in dose or frequency. As the hours passed, our father lingered, hypotensive and tachypneic. The surgeons did not answer nurses' pages, nor did they come to evaluate. They had moved on to other cases where success was still possible. We were left helpless in our vigil. As the day ended, our friend the advocate, surveying the situation, ordered a morphine drip and weaned the ventilator. The date was 2/20. Our father had found peace.

Our father, the mentor, had taught us a valuable lesson, one seldom taught to doctors: the experience of a patient's family when things go terribly wrong. Here, a physician gifted in humane communication may be as important as one with technical skill. While we were blessed with a physician–friend who could be our father's advocate, we wonder how others would have managed without such connections. We also wonder if things would have been different had the doctors known our father as a person. We wonder if they knew of his remarkable rise from dire poverty in India. We wonder if they knew of the hundreds of pharmacists he had taught or his international reputation as a scientist. We wonder if they knew of his simple dignity and the respect that he showed to all. We wonder if they knew that he was a caring husband and father. We longed for a physician who knew our father as more than just another case.

Time has brought healing and an opportunity for reflection. In addition to the usual sense of profound loss, we were left with the “what ifs” that accompany any bad outcome. As internists, we were tempted to think that, had our father's cardiac arrest occurred in the coronary care unit, the experiences surrounding his ultimate demise might have been different, perhaps better. His preoperative experience, however, suggested otherwise, as communication there appeared to be equally fragmented. As friends and colleagues, physicians and nonphysicians alike, have related personal stories of family illness, we have come to realize that poor communication transcends site of care or physician type. The experiences of others are painfully similar to ours and may be all too common. The underlying message in all is clear: The relationships that clinicians develop (or fail to develop) with their patients and patients' families have an impact that extends beyond the bedside and persists long after the clinical encounter ends.

For us, the impact has extended to our professional lives. We spend more time now speaking with patients and their families. “Patients are people too,” we remind housestaff and students. We read journal articles on patient–physician communication and aspire to become students of this emerging art. “We hope that you will teach future generations of surgeons and internists that humanistic qualities are just as much the mark of a qualified physician as technical skill,” we wrote to the administration of the medical school. The response was sympathetic, attributing our experience to a “breakdown in communication resulting from a system of faculty coverage intended to maximize the time spent in the operating room by surgical attendings … However, this behavior is the exception not the rule, the evidence being the numerous letters the faculty have received over the years commending them for their expert and compassionate care.” Action was promised “to decrease the likelihood of such a situation from occurring again.” While we had hoped for a more concrete plan for improvement, we have since realized that the problem has no simple solution. Substantive change, the kind that affects more than one institution, will first require recognition by members of the entire profession that a problem exists. Moreover, the frequency with which this situation occurs must motivate the profession to change rather than to accept that little can be done. We must all remember that the next patient in this all-too-common story will also be someone's family member, perhaps even one of our own.

There are lessons in every experience—death, like life, can have purpose and meaning. For us, an important lesson has been the realization that as physicians and family members, we are in a unique position to lobby for change; we have only to seize the opportunity. Our shared experience has engendered in both of us a deep commitment to fostering a dialogue among health professionals on the patient–physician relationship. Recently, at a leading university medical center, we took our first step by participating, as representatives of a patient's family, in a discussion on end-of-life care. Present were faculty and housestaff representatives from internal medicine, surgery, family practice, anesthesiology, and medical education. A distinguished leader in the field had been invited not only to participate in the discussion but also to lend his voice to this effort for the day. The result was a constructive exchange of ideas and personal experiences, and a commitment to finding new ways to teach future clinicians the art of communication. We plan to support and participate in similar activities at other institutions, perhaps someday at the hospital where our father died. By sharing our father's story, we hope to spare other families the agony of reliving our experience. We know that he would have expected nothing less from us.

Rest, dear Father. We are paying the bill.

Jaya K. Rao, MD, MHS

Atlanta, GA 30084

Venkatarama R. Koppaka, MD, PhD

Richmond, VA 23226-1220





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