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Spending time in the shoes of those faced with terminal illness


A physician ponders a patient's death and what it must be like to become sick and die so far from home, to be offered words of comfort in a language you do not know, and to wonder what might have been done differently.

It's 7 a.m. Not yet fully awake, I am in the kitchen making coffee. As I wait for the machine to finish brewing, I call to check my hospice voicemail. The first call is from Ben, the night nurse, informing me that Mr. Nguyen died during the night. In an uninflected voice, Ben gives his report: time of death, funeral home, and family "coping well."

Mr. Nguyen, a Vietnamese immigrant in his late 70s, had pancreatic cancer and was near death when I went to see him earlier in the week. Before my visit, the admitting nurse told me about his rapid decline and the difficulty she had had communicating with him and his wife because of the language barrier.

"There is a daughter," she told me, "but her English isn't all that good either, so it's a challenge to find out about his symptoms. By the way, Dr. Porter, be sure to take off your shoes before you go into the house. It's a cultural thing."

Mr. Nguyen did not hear me enter the room, so I stood beside his bed observing his shallow breathing. Each inspiration separated the top of his gray pajamas from the bottom, exposing his swollen abdomen. Soon his daughter came in and introduced herself. I judged her to be in her late 40s. The dark circles under her eyes betrayed the stress and fatigue brought on by her caregiving.

"Thank you for coming, doctor," she said in heavily accented English. She went to her father's side and wakened him. Speaking Vietnamese, she told him who I was and he smiled weakly as I made eye contact and grasped and shook his hand, wondering if that was the proper greeting in his culture. He kept smiling and said, "Thank you," before falling silent.

With his daughter interpreting, I asked Mr. Nguyen if he was having pain, nausea, or other symptoms. His daughter told me he was having abdominal pain but didn't want to take medication for it. He was not eating or drinking much of anything. He had fallen during the night when he tried to get up to go to the bathroom, and she and her mother had had trouble getting him back into bed. He wasn't able to use the urinal because he couldn't void lying down.

About this time, the hospice nurse arrived. She took one look and told me that Mr. Nguyen had declined significantly since her visit 3 days ago. Noting that the patient had slid too far toward the foot of the bed, she placed a draw sheet under him, and we slid him up into a more comfortable position. We talked about other things that might be done, including minimizing the risk of further falls. We decided that a catheter would decrease his need to get up to go to the bathroom.

Once again the daughter and patient conferred in their native tongue. As they did, I wondered aloud to the nurse whether it would be acceptable for her to insert the catheter or whether for her to do so would violate cultural norms.

Mr. Nguyen agreed to let us put the catheter in. I asked if he would let the nurse do it, or if he wanted me to.

"He wants the doctor," the daughter said.

"Would it be all right if the nurse helped me?"

"That would be all right."

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