This piece was published in the Los Angeles Times on August 10, 2009.
My father died peacefully in his sleep at home not quite 10 years ago. Ever since, I tell people how incredible the experience was for my sister, my mother and me.
Dad had non-Hodgkin's lymphoma and was given four weeks to live without treatment. After three weeks of radiation, his throat was swollen shut and he couldn't eat. His doctor said a stomach tube would enable him to continue radiation treatments. I looked at my father, who was very clearly dying, and knew that further treatment would condemn him to a tortured death in the hospital.
We told the doctor we wanted to take Dad home. Although the physician didn't initiate the discussion about stopping treatment, he was supportive after we made it.
Dad lived for 29 days after we took him home. The swelling in his throat subsided, he was able to eat normally, and my sister and I had time to help him put his financial affairs in order to provide for our mother after he was gone. One of the last times I saw him, I spooned ice cream into his mouth. Our memories of his last days are ones of solace, not regret.
Not only was Dad spared intense suffering, Medicare was spared more expense when we opted for at-home hospice care.
Our family's end-of-life discussion was excruciating. At first, Dad didn't want to admit he was dying because he was fighting the cancer as hard as he could. He had withstood three grueling weeks of radiation so he could get better, but it wasn't working.
Verbalizing it -- acknowledging out loud that he was dying -- was the hardest thing for our family to do. Dad's physician helped us discuss the hospice option with him. The doctor came to Dad's hospital room and told him, man to man, that guys in his condition were considered terminal. The doctor told him in the way Dad liked to get information: straight up, with little show of emotion.
What families don't know is that once this fact is discussed and accepted, everyone can move on. All the pretense of trying to get better is gone. We helped Dad get his earthly affairs in order. Two of my siblings hadn't spoken to Dad for twelve years. When they found out he was in hospice, they came to see him. They wouldn't have been able to do that if he had continued the radiation and died in the hospital.
A study by scientists at the Harvard-affiliated Dana-Farber Cancer Institute in Boston found that patients who had an end-of-life conversation had an estimated average of $1,876 in healthcare expenses during their final week of life compared with $2,917 for those who did not. Continuing treatment amounts to a 36% increase in costs. Everyone wants to lower healthcare costs, but not by cutting short a loved one's life, of course. This study also showed that patients typically didn't live longer if they received intensive treatment and that palliative care (providing comfort, not treatment) led to more comfortable deaths.
My father's peaceful death came as a result of his family's commitment to see that he was well cared for at home. The hospice professionals were with us every step of the way and helped us cope. Caring for my father, even with the help of professionals, was the most difficult thing I have ever done. My sister and I devoted ourselves to his care for those twenty-nine days, but neither of us has any regrets. We know we did the right thing.
When I told my father I named my goldfish after the custodian at my elementary school, he laughed. I was surprised by his reaction, because I meant to express my admiration for Mr. Butler by naming my fish after him. My eight-year-old sophistication wasn’t developed enough to understand the nuances of racism.
This was published in the Pasadena Star-News on January 21, 2008.
As I watched my black goldfish swim around in its little bowl I felt proud to have named it after Mr. Butler. I had a vague idea of why my dad found it humorous that I named my black fish after an African American. Growing up in a small town in the Midwest in the 1950’s, I was not exposed to much racial prejudice, mainly because I was not exposed to anyone who wasn’t Caucasian. Everyone I knew was white, Christian, middle-class and had a mom and dad living under the same roof.
Most of us can recite the names of our elementary school teachers long after our childhood is over because their names are buried deep in our memories. I can recall the good teachers and the bad, but it is Mr. Butler, a man I later found out who shouldhave been a teacher, that I remember with fondness and respect.
After I was grown, my mother told me that Mr. Butler had a teaching certificate but in the middle of the 1950’s in a small Ohio town, an African American male would not be hired to teach. When people despair of our culture today and wish to return to the good old days of the 1950’s, they must remember that those old days were not good for everyone, especially qualified African Americans who were denied the opportunity to teach.
All the kids liked Mr. Butler. He was friendly and funny and seemed like a regular person to me. As a very young child I was told that I should not breathe the same air as black people. This was explained to me, along with other tidbits of wisdom -- like holding my breath while driving by a graveyard or I would die. When you are a kid, you take these things as facts. When I was about ten-years-old I got on an elevator with an African American elevator operator. I prepared to hold my breath, as I was advised. Instead, I looked into his eyes and saw a regular person, like Mr. Butler. Figuring I had nothing to dread, I took in a deep breath of air and wondered where my friends and family got such crazy ideas.
Many of us grew up in towns like the one I called home, where racism was part of the fabric of every day life, taken for granted and mostly unchallenged. I grew up and moved away and decided to live in a more diverse community. I watched brave African Americans fight for the right to vote, to live in society without fear and to be hired for jobs for which they are qualified. Dr. Martin Luther King admonished us to judge one another by the content of our character and not the color of our skin. The power of his message transcended the racist messages I had got from people I was supposed to believe and trust as I was growing up.
When I see Barack Obama on TV, I sometimes think about Mr. Butler. I wonder if he is still alive and imagine that he is gratified by the changes he has seen in his lifetime. I wonder if he spent his career as a custodian or if he ever found a place to teach. I have to wonder why he stayed in my little town, with its racism so entrenched and seemingly insurmountable.
As we remember Dr. Martin Luther King, we recall his famous “I Have a Dream” speech and the power with which he delivered it. He spoke for all the Mr. Butlers who were judged by the color of their skin and not the content of their character. When I think back to my childhood I remember the strength of Mr. Butler’s character and hope he found a classroom in which to share it.
Kathleen Vallee Stein