By Elizabeth Stewart
My mother died two years after being diagnosed with stage 4 ovarian cancer. She had for years believed strongly in naturopathy, so after a six-month period of remission, when her cancer returned after a round of integrating complementary medicine with chemotherapy, she chose to treat her cancer solely with alternative treatments.
I am a nurse who believes in evidence-based practice and also in innovation. I accepted my mother’s decision not to use chemo when her cancer came back because I knew from researching the disease that when ovarian cancer comes back, life expectancy is similar with or without chemo.
So, despite my reluctance to trust treatments that have not been tested for safety or efficacy, I reasoned that little harm could come from alternative treatment methods at this point.
I watched as my 73-year-old mother spent the last year of her life replacing the foods she loved with concoctions of cottage cheese mixed with flaxseed oil. I listened as she justified spending thousands of dollars and hours of her precious remaining time traveling many miles to receive vitamin C infusions.
Hope for ‘miracles’
As she grew more ill, I gently questioned the supplements she was taking — often so many that there was no room left in her shrinking stomach for any food. And at times, when I could find evidence that a treatment had been scientifically tested — and proved not to be effective — I shared a strong opinion.
Yet the coffee enemas continued. Like a religious zealot, my mother completely and thoroughly put her faith, hope and money into treatments and practices promising miracles without any evidence that they actually worked.
When she was too weak to walk or stand, we were barely able to talk her out of leaving her hospice bed to take her dying body, along with $100,000, to a clinic in a small town in Ohio. The people there told her they could likely heal her because her cancer was not as bad as her hospice doctor was telling her. She died nine days later. According to the National Institutes of Health, nearly 60 million Americans spend over $30 billion on complementary medicine each year.
Some of these therapies have evidence backing their effectiveness, but many do not. Some will argue that lack of evidence is due to a bureaucratic and elitist medical system interested mainly in the profits of illness.
Yes, many alternative treatments have been put through the rigors of peer-reviewed trials and found to be effective. Dandelion tea has been proved an effective diuretic. Vitamin D has been proved to boost immune systems. There is evidence that melatonin may help regulate sleep cycles. Many conventional physicians have adapted the use of acupuncture to help with pain control based on evidence of its efficacy.
However, much of that $30 billion is money individuals spend on treatments that have not been tested, or have been tested and shown to be ineffective or even harmful. Others will highlight the fact that no treatment is an absolute guarantee to work, in spite of the backing, accolades and acknowledgements from venerable institutions. This is true; the body is a complex organism that may or may not respond as we expect.
Yet reliance on treatments without evidence of efficacy leads to more than wasted money. It can lead to false hopes, loss of ability to get affairs in order and lost opportunities for joy.
Alternative medicine’s appeal
I imagine there were many factors contributing to my mother’s faith in seemingly miraculous alternative treatments. But at the heart of that faith was a disease process she did not understand. Hers was an attempt for control over an uncontrollable disease attacking her body and hope that the data and experts were wrong — that there was something out there that would allow her to live.
We inhabit a culture where many form opinions and make decisions based on beliefs rather than evidence. Fear, hope and a grasp for control could also be propelling our willingness to embrace alternative facts on the biggest issues facing us — as individuals as well as all of humanity.
Perhaps the fear of a dying planet contributes to people’s willingness to trust facts brought forth by fossil-fuel investors rather than scientists. Maybe the solution seems too big or points to lifestyle changes too uncomfortable to face.
It could be that those who choose not to vaccinate their children, based on a scientifically debunked belief that vaccines cause autism, are grasping for a simple solution that is easy to control.
Perhaps hope is at the very core of why some choose to believe in alternative facts — hope that we will get better and live longer, hope that weather changes are normal, hope that our children will prosper, hope that what our parents taught us is still true and that our deepest values might not be wrong.
The 2018 Nobel Prize in physiology or medicine was announced recently for two immunologists’ research on “immune checkpoint therapy” for cancer. This innovative treatment allows a body’s own immune system to attack cancer cells. This news came in the same week as the death of a 20-year-old with leukemia who was receiving the immunotherapy CAR-T gene therapy. Because immunotherapy is being so carefully and transparently studied and the results evaluated, scientists will learn from this death. Perhaps evaluation and reassessment will make the treatment more effective or perhaps it will prove that the risks of the treatment outweigh the benefits.
Either way, patients will have reliable data to consider when making decisions about accepting this therapy. Nurses and other medical professionals are taught to rely on evidence-based practice when making decisions about how to effectively care for patients. When developing care plans for helping patients cope with pain or when creating systems for preventing patient falls, nurses will first look to see what has been proved to work. We are bound by formal, transparent systems and ethical boundaries when experimenting with innovation and when making promises to patients.
A Gallup poll shows that nursing was recently ranked the most trusted profession for the 16th year. I believe that nurses are so trusted because of our commitment to evidence and because of our reputation for being willing to tell the truth — even when providing alternative facts would be easier and more comfortable for patients to hear. My mother died peacefully in a hospice bed surrounded by her family and supported by evidence-based, alternative treatments complementing evidence-based, conventional treatments to make her comfortable.
My mother had just enough time to put her affairs in order and to say goodbye to those she loved — but only because my family partnered with her hospice nurses to support her as she accepted the truth that she would not be healed. We chased alternative facts away from that room with the truth. For this I am grateful.
Elizabeth Stewart, RN, is a nurse and the unit director of the Skilled Care Unit at Rush Oak Park Hospital. This article originally appeared in the Chicago Tribune.