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Joseph Nowinski, Ph.D.

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Who Should Make End-of-Life Decisions?

Posted: 07/16/11 11:58 AM ET

We buried my Uncle Ed two weeks ago. He was 84. Having served in the Merchant Marine in World War II and the U.S. Army during the Korean War, Ed was entitled to a full military funeral, which he received.

Ed was what you would call a man's man. Like most of his generation he never had much formal education, but he was smart. His skills always amazed me, as he could build or repair almost anything. He enjoyed good scotch and good cigars and he always drove a nice car. He died, in a veterans hospital, from cancer that had been in remission for several years but which was found to have metastasized to his ribs roughly four months ago.

Ed welcomed me and my mother when we visited him in the hospital. He'd been told his condition was terminal and that he could live anywhere from a month to several months longer. Though he was physically a shell of his former self, his personality was as hardy as ever. He shared a room with two other vets -- also terminally ill. One of them tossed and turned and moaned continually in his bed in a semi-conscious state. A framed photo of him, as a young soldier in dress uniform with several medals pinned to his chest, stood on a bedside table. The other man lay in his bed unconscious, his eyes closed and his face slack.

Despite the overly warm and stuffy room and the constant moaning of his roomie, Uncle Ed did not complain. Instead he engaged me and my mother in a long discussion of topics ranging from his recent return to Connecticut from a condo he and his wife had purchased in Florida two years ago, to what his grandchildren were up to these days. The conversation, however, was punctuated periodically by pauses when Ed would double over in his chair. He'd grimace as the pain gripped him, peaked and then seemed to gradually subside. It was difficult to watch, but when it was over Ed simply picked up the conversation where it had left off.

At one point Ed asked if I could get him a piece of paper and a pen, which I was able to procure from the nursing station. In between talking with my mother he jotted down several lines. Then he folded the paper and gave it to me. He'd written that the Veterans Administration was trying to confiscate half of his house in exchange for his treatment. He believed this was illegal and he intended to sue them. He wanted my help in doing this. "We can support each other," he wrote. After reading the note I looked up to find Ed looking me right in the eye. I nodded and said something like, "I'll take care of it, Uncle Ed." He nodded back, seemingly pleased.

The talk continued, with Ed totally lucid. His memory was actually phenomenal. He remembered details of his days in the military, as well as the names of many of the men he'd served with. In comparison I have a hard time recalling the names of many of my college classmates.

After another pause for a wave of pain Ed leaned over to me and whispered, "Joe, do you see a dog on my bed?" Caught off guard I actually glanced over, then shook my head. Ed saw that, nodded and then turned back to my mother.

End-of-Life Decisions and Competency

The doctors who were treating Uncle Ed had recommended a round of radiation therapy, aimed of course at his ribs. They recommended this despite Ed's prognosis. If he'd said no -- all on his own -- it is questionable whether his decision would have stood. That's because one could, at that point, question whether Uncle Ed was in fact capable of making such a decision. After all, he was both delusional and hallucinating. There seemed little doubt that it was the massive doses of morphine that Ed was receiving that contributed to his mental status. Still, would he have been able to make a clear-headed decision and would any decision he made about further treatment have been respected by the doctors who were pressing for further treatment?

My Uncle Ed was far from an exception. Our hospitals and nursing homes are increasingly populated by men and women who are terminally ill and in pain and whose mental status is compromised. In too many cases, I would argue, treatment decisions are made unilaterally and always with the goal of staving off death (even if that is only for a few days or weeks). I am not saying that we should simply allow these men and women to die. What I am saying is that people who know they are terminally ill need to anticipate that they may one day be in Ed's position and plan for it.

Fortunately Ed and his wife, Joan, had anticipated what might happen. That would have been typical of my uncle, who was nothing if not a planner. He and Joan had consulted with their attorney and signed documents transferring as much authority to Joan as Connecticut law allows. Joan in turn told the doctors that there would be no radiation therapy, chemotherapy, or any other form of treatment other than pain control.

The day after our visit Ed's condition suddenly worsened and he was moved to the hospice unit of the hospital. He was given increasing doses of morphine. A day later he contracted pneumonia, forcing another decision. By then he was rarely conscious and though he recognized Joan's voice he seldom opened his eyes. He was obviously also in pain to a degree that even massive doses of morphine were barely touching.

Joan declined treatment for the pneumonia. A little less than 48 hours later Uncle Ed quietly passed on. The day of his funeral was sunny and warm. I helped to carry his coffin. Following a rifle volley in salute and after a distant bugler played taps, I watched one of the two graveside soldiers kneel before Joan and offer her a folded American flag, "from a grateful nation." At that moment I too felt grateful, to Joan, for taking charge in the end and for doing the loving thing for Uncle Ed.

For resources related to helping families cope with terminal illness visit www.newgrief.com.

 
 
 

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