I love my job, but it isn’t perfect. Nothing is.
Over the past two months there had been a patient on my unit with a poor prognosis of thrombocytopenia, a condition that chronically wastes the body’s platelets, one of the components of the blood associated with clotting. She developed this condition secondary to the treatment of her breast cancer diagnosis which had progressively metastasized to several of her organs, including her brain. She was on our nursing unit not for the management of her cancer, but for the thrombocytopenia as well as the cognitive decline as a result of her brain cancer.
I had admitted this patient to the nursing unit the first day she arrived and over the weeks and months that she was with us I watched her progressively decline. On admission she was very frail and week, but she was able to walk with assistance and communicate freely but several weeks later she was unable to walk and had developed uncontrollable and impulsive fidgety movements as she constantly rolled around her bed due to lack of cognitive focus and loss of motor control. Ultimately she became non-communicative, had experienced a fall in an attempt to get out of bed and was at high risk for aspirating the food that here family provided for her. Her dedicated husband and father were always at her side and her father stayed overnight six out of seven nights a week.
During the many weeks that I and my colleagues cared for her I found myself questioning the ethical principles of the care we were providing her. I saw a woman that was suffering a slow and prolonged death whereas her family saw a woman that was battling for survival. Her case was a challenging conundrum for all of my colleagues, both nursing and medical doctors alike. The medical team had conducted several ethical meetings to discuss and evaluate her plan of care because there was little diagnostic evidence that showed that her prognosis would do anything but deteriorate. Despite the medical recommendation to withdraw treatment and to focus on palliative care, the patient’s family adamantly maintained hope that she would improve and were unwilling to comply with the medical team’s proposed plan of care. They had even threatened to sue if the treatment plan was modified. So, for weeks on end she continued in a state of progressive decline that may have ended much sooner with far less suffering as we continued to administer chemotherapy and daily infusions of platelets. Each time I entered her room I found myself lost in her deeply engaging eyes: the eyes of a soul trying to reach out and communicate after her voice had long since failed.
The feeling communicated through those eyes will remain with me for years to come.
Many a night I walked home from work after having looked into those eyes burdened with thoughts that questioned the philosophy behind the care provided to her. I saw a women that deserved the right to die whereas her family argued for the right to continue treatment indefinitely. My perspective is obviously from the other side of the patient’s bed since the right to die is not something that is often considered by the patient or family members that seek medical care. The modern medical system has developed technologies that prolong life far beyond the limits of the physiological time table. The presence of these technologies has altered our cultural perception of death to the point that the dignity of the inevitable end of every living soul is often exchanged for an artificially prolonged existence that can hardly be considered life. Because we can prolong life, the cultural expectation is that we must.
Now, don’t get me wrong, I’m not questioning my career nor am I lambasting medicine in general. Modern medicine has given many individuals a second chance at a life that would never have been possible without the drugs and technologies available and care provided. However, there are always going to be difficult cases such as this woman with thrombocytopenia that I had cared for, and these difficult cases stretch the limits of what it is that providers of medicine can do and what it is we should do. When faced with cases such as this woman’s, I find myself questioning who it is that ultimately receives the benefit of the medical care provided. Is it for the patient or is it for her family? And if it is for her family, is the extreme cost of keeping this woman in the hospital for two months the best that our society has to offer to appease their emotional and spiritual needs? Have we reached a point in our societal evolution that delaying a family’s inevitable grief of loss is the best good that can be provided for them? Such questions are difficult to answer, especially when medicine’s goal is to do good and not harm. The root of these ethical questions are buried in our society’s definitions of those words: good and harm.
It was with these thoughts in my mind that I turned to James Le Fanu’s expansive work, The Rise and Fall of Modern Medicine, a book that I had first noticed on the shelves of Oxford’s Blackwell’s Books. Le Fanu’s book isn’t exactly a book on medical ethics as it is a book on medical history. However, in its discussion of medicine’s many problems Le Fanu adeptly criticizes the costs associated with medicine, especially the high costs of cancer survival as he notes that “the doubling of survival from one to two years has been accompanied by a 340-fold increase in the cost of treatment” (488). Many may shrink at the mention of cost when considering the care for the ill, especially for those with an unfortunate cancer diagnosis, but the fact remains that by 2010 medical expenditure in the US alone “has soared past the trillion dollar mark to a staggering $2.6 trillion” (439) with no foreseeable tempering of these rising costs. Looking at the staggering cost from the ground up, it is easy to forget that all of those costs translate to substantial human effort and labor. The question in my mind, and Le Fanu’s is why is so much effort focused on sustaining a low quality of life that is ultimately unsustainable?
Aside from my reflection spawned by the challenging care for the patient I discussed above, I found The Rise and Fall of Modern Medicine an informative and engaging read. Le Fanu provides a lengthy prologue that catalogs what he sees as twelve definitive moments in the rise of modern medicine. These moments include commonly understood hallmarks such as the accidental discovery of penicillin, the development of chemotherapies that ultimately prompted the treatment and cure of childhood cancer, and the first open heart surgery. These twelve definitive moments also included a few that are not as commonly recognized or celebrated achievements such as the development of corticosteroids and the discovery that peptic ulcers were caused by bacteria and not stress. Without listing all twelve definitive moments ad nauseam, I’ll say that in cataloging them with historical progression, Le Fanu provides a concise synopsis of the significant events and key players involved in the rise of modern medicine in the form that we recognize it today. His discussion of each historical event characterizes a theme that medicine’s rise came about as it rode upon a wave of post-war enthusiasm and serendipitous scientific inquiry that exponentially benefited and prolonged the lives of the developed world.
After presenting a clear argument that celebrates the triumph of modern medicine, Le Fanu proceeds to switch gears and criticize the medical establishment for losing the enthusiasm of post-war discovery and succumbing to capitalistic greed that has stifled the spirit of inquiry. Le Fanu argues that the vigor and excitement that was once thriving in medicine has wained due to the inherent nature that much of the “low hanging fruit” that plagued mankind for millennia such as the infectious bacterial diseases have now been solved by the advent of antibiotics and other such therapies. “Medicine is no longer as satisfying in the past. Many of the most interesting diseases that tested the doctor’s clinical acumen have simply disappeared” (423). Despite the advancement of genetics and the mapping of human genome, medicine has not received the benefits promised by these achievements due to the difficulty in applying the basic understanding of genetics to the diverse biological complexity that is still predominantly misunderstood.
Medicine’s further “downfall” can be partially attributed to the capitalistic nature of the pharmaceutical industry that has reaped enormous profits with blockbuster drugs that are often simply rebranded or reimagined therapies for previously treated diseases. Drugs like lipitor and prozac have become household names and the constant bombardment of advertisements have created a culture of “worried well” that seek treatments for benign symptoms due to the influence of the pharmaceutical industry. These symptom management drugs have become blockbusters but there is a dearth of new drugs that actually cure disease because the pharma industry is more interested in developing drugs that promote health maintenance rather than curing disease simply because medical maintenance requires a long-lasting and profitable reliance on therapies whereas cures do not provide the same level of profit. The cycle of capitalistic influence has also affected the quality of medical science since most research projects are funded by the very industry that benefit from the research, creating a conflict of interest that promotes profit over scientific integrity.
The influence of capitalism and the loss of academic integrity are just some of the merits of medicine’s downfall, as outlined by Le Fanu. The most influential component of the downfall is ironically the cultural influence that medicine’s benefits have achieved. The accomplishments of the past century have the benefit of prolonging life through the prevention of common infectious diseases, but in prolonging life for all members of society, our culture has come to expect medicine to continue the miracle of ever-lasting life. The risk is that we now have a culture that thrives beyond the natural life cycle, but this has become a culture removed from experiencing the natural and inevitable suffering of death – this paradox creates a culture that is all the more troubled and surprised by death’s arrival when it inevitably must pronounce its conclusive arrival. Doctors and nurses must constantly practice their craft in fear of a litigious backlash because any failure to prolong life is at risk of being misconstrued as negligence. True negligence does exist, of course, but the expectation that medicine can cure all ailments has falsely influenced the population’s expectations of their provider’s medical powers.
When the women with thrombocytopenia finally did pass away, I wasn’t on shift. I came to work the following day and when I walked past the room that she had lived in for the past two months I did a double take as I recognized that it was not she, but another patient occupying the room that once was hers. Based upon the steadfast denial of her palliative state, my colleagues and I were expecting a dramatic scene from her family when the day finally would come, but thankfully, I was told, she passed peacefully when she finally left us and her family accepted her passing with peace as well. Perhaps their steadfast and adamant devotion toward remaining at her side throughout this long decline had prepared them in ways not apparent through our communication with them.