I always thought coping with a dying parent was something I would deal with much later in life, maybe in my 50s or 60s. Last week, at the age of 33, I found myself discussing end of life issues with Anna, my old college roommate. Our fathers are only in their 60s, but both are seriously ill; my father has lung cancer and hers has terminal leukemia. We talked about the whole treatment/hospital routine and the stress that it places on us. It is difficult to take care of a family, look after sick parents, and work without something giving out along the way, usually your own mental and physical health.
We both know that lurking in the background are some difficult decisions that will need to be made. Anna's father is tired of chemotherapy and being in the hospital; he's decided to forego treatment and go home, which means he has approximately 4-6 weeks left to live according to his doctors. No one in the family wants to talk about it, but Anna knows that if her father is truly set on not receiving treatment, he has to give clear instructions.
Anna talks to them about living wills and advance directives. Everybody is uncomfortable, nobody wants to deal with it. Finally, her father agrees to fill out a template Anna found on the internet. In it he records the fact that he wishes not to receive treatment to extend his life; however, at the end of the document he sort of backs down and states that it is up to his wife to decide. So, they are back to square one. Needless to say, Anna is frustrated, and I know exactly how she feels.
During a routine test to check if the cancer had spread, my dad went into anaphylactic shock due to a serious allergic reaction to the iodine used in the test. He went into full cardiac arrest three times before he was stabilized and moved to ICU. The doctor in charge came out to ask my sister and me if my dad had left any “instructions.” Huh? We were just there for a test, what was he taking about?
Dad spent a week on a respirator in ICU after developing pneumonia. At first they kept him completely sedated, but as he got better they decreased the sedatives in order to remove the respirator. His arms were in restraints so he wouldn't pull out the tubes sticking out from what seemed like every part of his body. You could see the desperation in his eyes, and let me tell you, it was a pitiful sight. He couldn't speak with the tube down his throat; we gave him pen and paper so he could communicate.
Over and over again, he would write, “Disconnect me, I want to go!” “I can't pull the plug. You're alive, Dad!” I kept saying. No matter how many times we explained that he was out of danger and getting better each day, he was convinced in his weak and disoriented state that he was dying and wanted us to let him go.
He did get better and a few days later, while still in the hospital, he told us to never let them put him on a respirator again, to just let him die. Huh? Are those the “instructions” the doctor talked about? My sister told him to stop being silly, we would never just let him die! We wouldn't? Are we supposed to make that decision for him? I know I wouldn't want anyone to decide for me, and I said so. She just looked at me like I had just declared I was planning to murder dad and adamantly refused to even discuss it.
It has been more than a year since then and the subject of what to do if worse comes to worse hasn't come up again. Dad has been in and out of the hospital several times. We all know that his chances are slim; the survival rate for that specific type of cancer is minimal. Yet we all pretend the worse won't happen and we will never have to make that choice.
No one wants to carry the burden of deciding to end someone's life. Much less when that person is the one who gave you life. So, who should decide then? They are the ones who are dying, they should decide, Anna says. But who wants to give up hope when it's the only thing you have left, I counter. No one wants to decide beforehand because there is always hope that they will make it, no matter what the odds are. If they commit to a living will or anything else, they are effectively denying themselves that last glimmer of hope. How can someone do that? I guess it is easier to let somebody else take on that burden.
So, Anna and I are back to where we started. Waiting for the inevitable while we all pretend it won't happen. Hoping that, when the time comes, someone will be strong enough to decide.
Bio: Up until a few years ago Martha Dade was part of the now reviled breed of equity research analysts. As a result, her experience as a writer mainly involved writing financial reports on companies and stock recommendations. She loves writing and what she wants to do now is to be able to express herself freely.