How can we judge, as Hemingway often did, that someone died a good death? Telling the truth to the terminally ill might be a start.
A Good Death
By Rene' Holden
In a lecture recently a highly knowledgeable and extremely human, sympathetic palliative care physician described the terminal illness and eventual demise of a twelve-year-old child. The mother of this child could not come to terms with the child’s illness nor the terminal nature of it. She chose not to let her child know.
As background, the father was completely absent from the family. The child had slept with her single-mother most of those twelve short years. Then once admitted to the hospital for palliative care, this young patient was denied any information about her condition. Her mother forbade anyone connected with her case to reveal the gravity of her sickness to the patient. With every adult around her lying to her or avoiding her questions, and her primary caretaker, her mother, unwilling to let the child participate in the end of her physical life on earth, this little girl developed a psychotic state, according to this physician. The patient screamed in fear at dark demons with glowing red eyes coming to her and lurking in the corners of her room. And still no one would tell her the truth. The lecturer described this preteen’s death as the worst one she had witnessed in her professional career.
Since I am not an expert in anything that matters, especially death, it most certainly is not my place to judge another’s demise as a good or bad event. Nor can I judge the heartbreaking decisions this single parent made for her child. Most likely, this mother had excellent and convincing reasons for her decision to keep the truth from her child. Most good parents want to protect children from fear and pain. There is no proof that the child’s psychosis developed from the inability to trust any of her caretakers.
However, it seems possible that lying to a child who most likely senses something is terribly wrong with his or her health is not best.
Truth sets us free.
Nothing in human relationships is more simple than that statement. Truth is light while lies can create dark demons. Who knows if the fear of death or the fear of the demons was worse?
Again, it is my good fortune that up until now the loss of a young child has not befallen me. The sudden death of my adult stepson a few years ago was terrible yet quick, and we had no choices to make for his end. He was completely alone and discovered a day later. Thus, the comparison to watching the gradual demise of a beloved daughter or son is not justified. Children are not supposed to die before their parents these days. We Americans hold life extremely precious, to the point that we can scarcely speak of it. Even knowing that we will all end, at least physically,
At the opposite end of the spectrum of loss of a child, I did participate in the end of my own mother’s life a few years ago. Again this does not compare to the death of a child because we expect from an early age that our parents will grow old and die. My poor mama developed renal cell carcinoma (kidney cancer) in her late 60s. While this disease is treatable, there were many other complications and my mother never recovered fully from the surgery that removed an enormous tumor from her kidney. But given hope and the possibility that kidney cancer did not have to mean death, we all just kept hoping. And when lucid, mama never talked to me about dying. We just took every day one at a time, listened to doctors who said things like ‘metastasis’ in front of her, and tried to find ways to help her. Was I untruthful? I don’t know. I hoped that she would recover and thought that she might.
My father said she told him ‘This looks like the end of the road for us,’ but he just kept reassuring her that they would beat it. Somehow, they would beat this setback like any other problem they had worked out. Did she want to talk about it? It probably would have been a more remarkable and ‘good’ death if they had. Does it matter now? I think if my parents had been able to tell each other what it felt like and what would happen, then it would have transformed their relationship. The level of love and truth between them would have been astounding.
I wish I had talked to my mother about how she felt about dying. But I think she might have tried to protect me. She probably would have wanted to keep me from pain or fear as she did all my life. When my grandfather, her father, died when I was 9, I was not allowed to attend the funeral for fear it would upset me. When my grandmother died when I was 19, we all went to the funeral, but it was a shock because I did not know how close she was to passing away. When my father’s father died, no one told me for years and no one attended the funeral. When my paternal grandmother died, no one told me till after the funeral and my father did not attend. A family history of avoiding this subject is in me.
I don’t want the past to become my future.
Having reached the age of fifty with good health, I am looking forward to many more years. My life has been good and full with lots of love. Still, I want to face the end with authenticity. I want my family and friends and doctors to know that I want to know the truth about my life and health if I’m lucky(?) enough to make arrangements. The best for me would be a sudden termination with no knowledge of it beforehand. However, despite the media attention to accidents, murders, and war, the immeasurable majority of us do not die suddenly.
On the other had, if stand up comic Stephen Wright’s assessment is correct, then all death is sudden – “You’re alive, you’re alive, you’re alive, you’re dead…..” Perhaps this seems inappropriate here in light of the serious attitude we all have about death.
Having time to think about it beforehand and saying good bye makes it seem like a long or short death, a good or bad death. We think in the terms of these opposing values unable to say “she died because she died.” We cannot separate the illness or the accident or the evaluation of events as tragic from the fact of death just happening. It is the grieving that we can’t seem to laugh about. The honor we want to give to the memory of our loved ones is not humorous for some reason.
I am creating the possibility of being honest about my demise. I want it to be extraordinary and not tragic. I want to be remembered as someone who loved deeply: my great husband, my outstanding son, my beautiful daughter-in-law, my extraordinary grandsons all, my prodigal sister, my dear, dear friends.
My heart was inspired by that lecturing doctor who worked (and still works) every day with parents and children who had such a short time together. How strong and brave to tell the truth to these families, so they could face the end with the light shining instead of dark, frightening corners.
Give me a good, truthful death any day.