“Somehow, in my case, I always thought they would make an exception.”
– Epitaph on a tombstone in Philadelphia
Allow me to express my bias at the outset – I am a believer in the hospice movement. Unfortunately, there is a great deal of misunderstanding and misinformation amongst both patients and physicians. Some believe that hospice is only for those who are expected to die within hours or days. Others believe that by choosing hospice a patient must forgo any active treatment of their disease. Both of these statements are erroneous. The problem is that different hospice organizations offer different levels of care. Sadly, these differences are frequently determined by the reimbursement program from which funding is received, and is a variable of profit vs. nonprofit mission of the different organizations. Hospice therapy is available as an outpatient adjunct that gives support not only to the patient but also to family members who act as caregivers. When the time comes, a transition can be made to inpatient treatment.
With all too great regularity I see patients and families opting to undergo painful and uncomfortable chemotherapy regimens for diseases where a ” good result” is measured in terms of days and weeks. I don’t pretend to know the answers to all of life’s choices. What I do know is that the choices people make are strongly influenced by the manner in which those choices are presented to them. I realize that when patients are grasping the frayed edges of life, the hope for one last chance, one last miracle, is a strong aphrodisiac that compels them to try anything. Perhaps some physicians are overly optimistic, afraid to “tell it like it is” for fear of confronting the patient’s mortality would remind them of their own. Sometimes patients are given the stark proposal of chemotherapy or “nothing,” an offer severely and unfairly limiting the patient’s options.
It seems far too often we choose quantity over quality of life. Is this something built into our genes, like the primordial fight-or-flight response? Does the desire to live overwhelm all our analytical thinking and coerce us into making unsound decisions? Or is it that we have not yet experienced the absence of a future and thus are unable to understand such agonizing despair? Perhaps it’s a bit of all three.
In the discussion of chemotherapy I have often heard a common refrain, “Who am I to deny the patient? Who am I to deny hope?” But hope is metaphoric with the diagnosis of a life threatening illness. It is no longer biased by the calendar or measured by the number of days, but rather governed by the control of symptoms, the reconciling of relationships, and the appreciation of a sunrise, a sunset, or the touch of a loved one. A physician’s job is to educate patients and be their advocate, to weigh benefits and burdens, to peruse guidelines in an effort to provide rational suggestions, and in all honesty, just be there for a fellow human being entrapped in the chaos of disease. To me, this represents both the science and art of medicine.
Don’t mistake me for a therapeutic nihilist. I believe that chemotherapy has helped millions of people, and continues to do so. I also believe that there is a difference between the preservation of life and the prolongation of death. Many of us make the mistake of not allowing family and friends faced with imminent mortality to discuss with us their fears and desires. Attempts to broach these topics are often met by comments like “What are you talking about? You will be fine soon.” Had our own fears not terminated these discussions, what might have we heard? Based on my own experiences with dying patients, they need to be a reassured that we will remain with them and not abandon them. They need to hear that while death is inevitable, pain can be alleviated and controlled. They need the opportunity to discuss spiritual issues. They need help in the setting of the realistic short term goals, such as seeing a grandchild one more time, or the opportunity of saying goodbye to an old friend. For as long as we insist on pretending with them that everything will be OK, we deny them the privilege of discussing these all important issues with us. Given the fact that death is an inevitable part of life, it is remarkable how our society continues to try and bury it’s head when confronted with this reality. Aside from depriving the dying from much needed comfort, we expend a tremendous amount of resources on what is not only futile but also harmful care.