October 25, 2011
Controlling who shall live and who shall die … and when
My 93-year-old father and I have little left to say to each other.
He sleeps while I sit by his side. Every so often, Dad wakes up, and looks with some confusion around his small room, at the hospital bed, the TV and the whiteboard where someone has printed in large letters: “Today is WEDNESDAY, Aug. 3, 2011. Your daughter Ellie is coming this morning.”
The visit was an impulsive one, based on the fact that Dad sounded depressed over the phone. I flew to Ohio to give him some TLC.
And I get it back. In fact, most of what Dad has to say these days consists of, “Hi, sweetheart. I love you so much!”
And then he goes back to sleep.
The stroke Dad had 10 years ago left this fiercely independent man — who played tennis into his 80s and helped hundreds of patients deal with phobias and fears — unable to handle many of his activities of daily living.
In the past year, Dad needs help with everything but feeding himself.
One afternoon, during our short visit, Dad had something new to say. “I hate being such a pain to people and needing so much help. I can’t even wipe my own ass. I really wish this would end. El, can you get something to help me die?”
I was not surprised that he wants this to end.
“Of course you can’t do anything. I wish a doctor could give me some poison or something. I’ve had a great life. Enough already.”
Then he looked at me and said, “I’m so sorry to be so negative, sweetheart.”
I assured him that I completely understood.
Then he closed his eyes and fell asleep.
I recently watched the documentary, “How to Die in Oregon,” which featured a woman with cancer who had a prognosis of six months. Because of Oregon’s Death With Dignity law, she had a prescription for a drug “cocktail” that would end her life. The moving film observed as she, her husband and two young adult children talked about their options, their love for each other, their fears and how to determine when her quality of life would mean that it was time for her to die.
I know that many people consider this “playing God.” When I Googled the Jewish view, I consistently found rabbis rebuking assisted suicide based on Jewish law.
So, I called my friend, Rabbi Steven Carr Reuben of Kehillat Israel, a Reconstructionist congregation in Pacific Palisades, to get his thoughts on the subject.
Rabbi Reuben agreed that Jewish tradition says “it’s not up to us. God gives us life and God decides when life is over.”
“But we have, and we use, a huge array of human interventions in what otherwise would be God’s plan, every time we go to the hospital, go to the doctor or take medication,” he said. “If you can afford it, you can have a new heart! Do you think God intended us to have a new heart?”
Traditional Jewish law says we should not interfere with the natural process of someone dying. We are not supposed to stop it from happening. But we do.
Many people believe that God works through human beings through our creative minds and our ability to constantly invent and create, Rabbi Reuben says. It’s a partnership with God in improving the world.
“We human beings certainly have a long history of abusing the privilege of our own intelligence, from the most egregious experiences that we all know about — of the Mengeles and the Nazis, who used their own brilliance and their minds and their intellect to wreak the most horrendous torture upon human beings. No rational person is going to say, ‘Well, that was part of God’s plan, that human beings could do that.’ “
If he had a mantra, Rabbi Reuben told me, it would be, “Just because you can, doesn’t mean you should.” “So, just because we have the ability to extend life and keep someone’s heart beating, that doesn’t mean we should,” he said.
Many years ago, my mother was visiting my very weak and terminally ill grandmother in the hospital. Suddenly a light started flashing on the monitors. Nurses and doctors stormed in with paddles. My mother was desperate to stop what she called “the cruelty” to prolong her mother’s suffering. A physician she knew was walking by and Mom grabbed him, begging him to stop what was about to happen. He did.
For decades, my mother reminded us never to prolong her life. She had a clearly stated Living Will stating this. So, when she was in late-stage dementia, I stopped the staff from tube-feeding her. Mom could barely talk, but when I asked her if that was what she wanted, she nodded. She went into hospice care and died a week later.
“To me,” Rabbi Reuben said, “our challenge is to make the most humane, loving, compassionate and ethical choices that we can, about ourselves and about the world.
“In Deuteronomy, you have life and death, good and evil, blessing and curse. The phrase is, ‘Choose life.’ The way Hebrew is structured, life is linked with good and with blessing, and death is equivalent to curses and evil. Life means choose good, choose blessing. It’s not just life as in ‘my heart is beating’; it’s life linked with good and blessing.
“That’s the area in which I think we need more courage and bold rabbinic and spiritual leadership; to say that what is good and a blessing in life means quality and dignity and respect.”
Rabbi Reuben says we ought to be supporting more assisted-suicide laws, like in Oregon, where people can make rational decisions about ending their own life in advance and give loved ones the power to make loving and compassionate decisions.
Is there the possibility of abuse? Yes. “But, I’d say that everybody I know who is rational and cares about these things believes there’s abuse now, on the other side. So, it’s not about avoiding abuse; it’s about creating more compassion and caring and love,” Rabbi Reuben said.
My father is still going. He sleeps a great deal and sounds very weak on the phone. That is, when I can get him on the phone. Sometimes he doesn’t answer when I call; he’s too tired or the staff has unplugged the phone so Dad won’t call 911 in his confusion. On the rare occasion that Dad answers and he can actually hear me, our conversation is brief. No longer does my father ask me about my love life or my son or my work. There is no more sound advice for my life’s challenges. I feel like I’m losing my father, a tiny bit at a time.
But the deep love remains.
This morning, when he heard my voice, Dad said he was very, very tired. And then he added, “Ellie, I love you so much and have loved you your whole life. I’ve had such an amazing life. But, if God would take me right now, I’d give him a big smooch on the way up.”
Though it’s painful to imagine life without my father, and I haven’t truly let myself think about how much I’d miss hearing his voice and knowing he’s there, the fact that he is so unhappy makes me hope his suffering will end soon.
Ellie Kahn is an oral historian who records family and organizational histories, and is the producer of “Meet Me at Brooklyn & Soto.” Visit her company, Living Legacies, online at livinglegaciesfamilyhistories.com.