Authors

  1. Simone, Joseph V. MD

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I read James Agee's autobiographical novel, A Death in the Family, decades ago and it left a lasting impression on me. Today I searched my bookshelves and found that same book, a browned and fragile paperback published in 1959 by Avon Books. The cover price is 75 cents. The original book was published in 1957, two years after Agee's death in his 46th year. The book was awarded a Pulitzer Prize in 1958.

 

Agee, born and raised in Knoxville, Tennessee, writes beautifully, and on top of that, the novel has substance. He paints a clear picture of life among the lower middle class in Knoxville in the early 20th century. The story is based on fact. Agee's father drives to see his own father who had a heart attack. On the way home Agee's father is killed in an automobile accident. The impact on the entire family, but especially on Agee's mother, and how they cope in 1915 Knoxville is the gist of the novel.

  
JOSEPH V. SIMONE, MD... - Click to enlarge in new windowJOSEPH V. SIMONE, MD. JOSEPH V. SIMONE, MD, has had leadership roles at St. Jude Children's Research Hospital, Huntsman Cancer Institute, Memorial Sloan Kettering Cancer Center, the University of Florida Shands Cancer Center, the National Comprehensive Cancer Network, and the National Cancer Policy Board, and has served on the NCI's Board of Scientific Advisors.He has been writing this award-winning column since 2003, and welcomes comments and suggestions, as well as for his blog on career development for medical professionals (bit.ly/OT-JoesCareerBlog).Email him at

I was prompted to look for the book while I was making plans to go to Chicago to visit my sister Carole and her husband Ed. Ed is 78 and has been retired for a decade and a half. While still working, he was in an accident that seriously damaged one of his legs, and as time passed he had to use a cane and then a walker. Meanwhile, he began to have problems with arteriosclerosis, causing a mild stroke and poor circulation in his legs. Ed is stoic, and rarely complains, though he has been through some difficult medical procedures.

 

Ed's health continues to decline, and he and my sister know he is nearing the end and they have gotten ready for it. They have had all the end-of-life conversations and have made the key decisions long ago.

 

My sister takes care of him full time. She explored the possibility of getting some help with home hospice. However, since Ed is at risk of falling, no one will take the job-fear of lawsuits was given as the reason. Carole and Ed had already decided that they will get no more medical tests, have no visits with the doctor, will take only comfort medications, and they will not go to an emergency room. They are both well prepared for Ed's death.

 

I believe there are several reasons for this approach. First, Carole and Ed are both tough and quite rational about the limits of medical care. Second, when there was still hope for even a limited recovery, she spoke with the four doctors in our extended family (including a cardiologist and a pulmonologist) and all of us provided unvarnished opinions and information. Third, Ed has suffered quite a bit and he made an early decision that he would rather check out than live with constant pain and doctor visits and diagnostic procedures when the outlook was, at best, a troubled short extension of life. And the last reason has to do with my mother.

 

My mother died in 2006 at the age of 92. She was found by chance to have a pancreatic tumor. She knew that this was a death sentence, especially at 92 years of age. And she accepted that-no surgery, no diagnostic tests, and no hospitals.

 

She planned the process in detail, which I described in an earlier column (bit.ly/SimoneNov102006).

 

She allocated some of her belongings to family and friends and then said, "All the rest is just junk, so you can do with it what you want." She left us with two memorable quotes: When a neighbor dropped in and started crying, she said, "There's no crying here, I'm ready to go-but I am in no hurry."

 

The other was when my sister, my wife, and I were with her in her apartment. She was in good spirits and had made all her arrangements. It was lunchtime, so I offered to go out and bring back something to eat. I had told her that she could eat anything she wanted and did not need to take any of her diabetic, hypertension, or any other medication. She brightened up and said, "I'll have a Kentucky Fried Chicken dinner including mashed potatoes, and dark meat, extra crispy." We all had the same thing, confirming and celebrating her newfound freedom from dietary restrictions and medications.

 

Our entire family watched my mother deal with impending death. She reminded me of Frank Sinatra singing, "My Way," a paean to a life lived fully and joyfully despite mistakes, potholes, and disappointments. All of us-her children, grandchildren, and great grandchildren-watched her celebrate her life and accept its end on her terms.

 

It is difficult to describe or fully know the impact she had on all of us, even the younger ones. Not long after she died, we often said to other members of our family, "that's the way I want to go and I hope I shall have the opportunity to make that choice." And I would add-if I am unable to make a choice, I hope my wife and/or children will make that choice for me.