“Nothing in this world can be certain but death and taxes.” This quote from Ben Franklin is familiar to all of us, yet we Americans go to great lengths to try and prolong our lives and combat the Grim Reaper. Life expectancy is longer than ever. The average age of death is 76 for men, and 81 for women. Who knows what it will be in fifty years as scientists continue to search for ways to live even longer. My friends and I are in mid-middle-age, having spent upwards of five decades in the game of Life. We’ve watched helplessly as our parents have faced dementia, confusion, falls, cancer, Parkinson’s disease. We’ve helped them move into assisted living facilities, “God’s Waiting Room,” as a friend’s dad refers to it, and some of us have taken away their car keys. After recounting the horrors to which we’ve been exposed, we aren’t too sure that we want to live forever. Old age ain’t for sissies, this we know to be true. “Just put a pillow over my head,” or “Push me in front of a bus,” are phrases I’ve heard uttered by some in our group. Due to my religious convictions, none of these are options, so don’t ask me to assist in hastening your demise, please.
My mother-in-law, aged 90, lived alone, drove herself around her mid-size town, read several books per week, and was extremely independent. On Friday morning of the 4th of July weekend, her housekeeper noticed she was unable to speak a coherent sentence, she had trouble “putting her words together.” She called a relative who took her to the emergency room. That night my husband received a call from a neurosurgeon who said his mother had a large brain tumor. We were shocked. Despite her age, she had no real health problems and took no medication other than for high blood pressure. Arriving at the hospital early the following morning, we found his mother comfortable in her hospital bed, reading a book and seemingly content. Then came information overload. Her doctors explained that the tumor would be biopsied to determine the type, a full body scan would be done to check for metastases, surgery would be scheduled to treat accordingly, but due to the tumor’s size the only option would be to remove a portion of it in an attempt to reduce pressure on the brain, minimize symptoms, and prolong life. We vowed to think this over during the long holiday weekend. Meanwhile, my husband’s mother seemed accepting of the fact that a large tumor was causing her inability to find the right words. She laughed when she tried to think of the word “laptop,” describing it as “that thing that is flat and opens and closes,” gesturing with her hands. We all laughed when my husband guessed “chicken sandwich!” We chuckled again when I brought her a chocolate frosty from Wendy’s and she called it a “Chinese slurpy,” which leads me to believe that the brain contains boxes of alphabetized index cards with words on them, and when it’s not working well, it chooses the wrong card.
Over dinner, we discussed the options presented to us by her doctors, realizing that every option involved invasion of the brain, which is not a good one even in a younger person. What if we found the tumor to be cancerous? What if it had spread to other areas of the body? Would she want surgery to remove a tumor in another organ? After sleeping on it, we concluded that we would suggest an option that the doctors didn’t present to us: that she not do anything; we would take her home and deal with the ramifications of the illness as they presented themselves. The next day, before we said anything, my mother-in-law clearly indicated that she wanted to go home asap, and would hear nothing of biopsies, scans, or surgeries. Then the doctors came to the bedside wanting to know if we understood the seriousness of the situation. They strongly encouraged us to at least biopsy the tumor. Why, we asked. She doesn’t want anything done. They gave us a life expectancy of 3-6 months, and we took her back to her home. We got hospice care involved and arranged for around the clock care. She never entered a hospital or doctor’s office again, and died peacefully at home six weeks later.
Back home, when we told friends and family of her diagnosis, everyone, to a person, asked, “Is there no treatment?” We replied, “None that can offer hope of a cure and is without significant risk.” During her remaining six weeks of life, she remained pain free, enjoyed visits from nearly all of her close relatives, ate 3 meals a day (with a bottle of Coke!) up until just a day or two before her death, and was seen by hospice nurses who tended to her changing needs. In the end, they kept her comfortable. Our family was with her two days before her death and she knew we were there. My daughters took turns holding her hand and reading letters and cards from friends aloud. Would she have lived longer had she opted for scans, biopsies, surgeries? Maybe. Would her quality of life had been better? Probably not. Would she have died of a brain tumor? Most certainly.
It is our human nature to want to fix every problem, to aggressively treat every injury or illness, particularly when our loved ones are suffering. We certainly cannot presume to offer advice about such a personal and emotional decision as when to decline invasive treatment of a terminal illness. But, based upon our experience, it’s important to consider how that may affect the quality of life for the time we have remaining in the game. We do recommend that you consider an advance medical directive, or at least ensure that your loved ones know your wishes. Sign a DNR when and if the time comes that you really don’t want to be resuscitated. We were lucky; my husband’s mother had done all of these things, and was coherent and able to make her own decisions when the doctors explained her options.
This is a morbid topic, literally, but one I think should be given some consideration by all of us mid-middle aged. For a more thorough and interesting examination of this topic, I highly recommend reading surgeon Atul Gawande’s “Being Mortal, Medicine and What Matters in the End,” or watching the Frontline documentary of the same name. And, best of luck with that aging thing.