“What if we give her some herbal remedies? What if we start her on a macrobiotic diet? Do you know anyone who knows somebody who…”
These were some of the questions I faced almost daily as an oncology nurse. The questions came from desperate family members and friends with a deep, well intentioned desire to try anything and everything to keep their loved one alive.
After being asked questions about the latest gel, diet or herbal remedy it dawned on me: I need a “remedy” to help patients and their loved ones face the anger, fear and denial that comes with impending death. I was trained to use high tech equipment and procedures but I never learned how to help my patients die.
Until the mid 1900’s, death was considered as natural a part of life as birth. It was expected, accepted and filled with ritual. When it was time to die the steps unfolded in a familiar pattern, everyone playing his or her part. The patients were kept clean and comfortable until they drew their last breath.
But in this age of technological wizardry doctors, nurses, patients, family members and loved ones have been taught that we must do everything possible to stave off death. We refuse to wait passively for a last breath, and instead pump air into dying bodies in our own ritual of “life-prolongation.” Like a doctor slapping life into a newborn baby, doctors now try to punch death out of a dying patient.
I remember a young woman who had received a stem cell transplant from a matched donor to treat her cancer. She took immune suppressants to keep the donated cells from attacking her own body. Unfortunately, this patient contracted a serious fungal and bacterial infection that migrated to her spinal cord and brain.
This patient was in our hospital unit for several weeks and was less herself every time I saw her. She asked me during the quiet hours of the night “What is death like? What does it look like? Will it hurt?” I deflected these questions because I was not prepared, nor trained and scared of the alternative to not fight for life. For several weeks she kept asking for all curative treatments to stop, but her doctors kept saying it was too soon, she was too young and she had too much to fight for.
Why do we use war terminology to describe the end of life efforts? “Keep fighting,” “They fought a hard battle,” “She is a cancer survivor or she was ravaged by the disease.” All this war verbiage makes it appear that dying is a failure.
My patient’s relatives started to arrive from far away. They had not seen her slow and gradual decline as I had. They were not prepared to say goodbye, and they became angry. They said things like “The doctors have given up on her.” “Her husband wants her to die.” “No one is trying hard enough to find the one thing that could save her.” “Maybe we need to get her to a herbalist or acupuncturist.” I had to leave the room.
After collecting myself, I went back into the room and took the time to talk with the angry relatives. I told them the medical version of this young woman’s cancer treatment, how she received high doses of chemotherapy to kill her cancer and that the infusion of stem cells essentially gave her a new immune system. I explained how immune suppression created the vulnerability to infections like the one she was experiencing.
I told them that sometimes a body gets too broken to be repaired and, despite all our drugs and scans and cutting-edge procedures, we just can’t “fix” it. There I said it. I blurted it out as if I was making a declaration. The room stilled, the family members started to cry and my patient smiled…weakly, but a smile. The truth had been spoken and the release into the room was palpable.
When someone works in the acute care system he or she tends to focus on the patient. The extended family members are often viewed as a “side bar”, less important and sometimes even considered an inconvenience. I have learned as a Hospice nurse that the family unit is almost as important as the patient and must be considered and incorporated into the patient’s care plan.
I’ve seen many people pass since that day many years ago. I have never forgotten that moment of breakthrough when I learned it is essential to advocate and articulate for those that are too weak or cannot speak. It is important to give voice to those whose end of life wishes need to be heard.
Helping patients die takes as much learning, technique, expertise and commitment as helping people to live.