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.
Kathleen Vallee Stein