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Noon: Alarms rang. The residents arrived. Equipment filled the room. The nurse manager called legal. Attending physicians hurried in and out. The family insisted that everything be done. The code lasted five hours and fifteen minutes. The room fell eerily silent when the patient died.
For weeks, the medical personnel who cared for this ninety-two year-old patient knew that she would never leave the hospital. Yet, for weeks, the patient remained full code status because her family insisted that Grandma would ultimately recover from her illness and return home, just so long as she was given a fighting chance. This case highlights a major failing of our current healthcare apparatus; namely, insufficient communication among physicians, patients and families about end-of-life care. A recognition of this failing, of course, forces one to consider exactly how medical personnel should communicate with patients and families about these issues.
The concept of medical futility is central to this consideration. In the Journal of Medical Ethics, R.K. Mohindra presents a conceptual model of medical futility that distinguishes between goal futility and value futility. “A defined intervention is goal futile when it cannot alter the likelihood of the defined goal emerging into reality. A defined intervention is value futile when it can alter the probability of the defined goal entering reality but the defined goal is deemed a goal not worth achieving” . Clearly, whether a medical intervention is declared goal futile or value futile depends entirely on the intervention’s defined goal or objective. It is precisely this objective that must be thoroughly discussed among patients, physicians and families.
When discussing the goal futility of end-of-life care, most patients and families understand the objective of a medical intervention as the maintenance of biological life. For ease of argument, biological life can be defined simply as the presence of vital signs. The logic, then, is obvious: if Grandma’s heart stops beating, we defibrillate it; if her blood pressure drops, we add pressors; if she stops breathing, we intubate and ventilate; if she becomes febrile, we cool her. Of course, this is a decidedly Cartesian manner in which to regard human life. It is founded in a belief that a physician can employ a logical method of scientific investigation to discern clear and distinct truths about human physiology. This “practical philosophy” then enables the physician to become a “master and possessor of nature…principally for the maintenance of health” . Within this over-simplistic construct, very few of today’s medical interventions classify, in theory, as goal futile.
With respect to value futility, however, most patients and families frame the situation quite differently because they recognize that Grandma is more than just a set of stable vital signs. In one respect, they assume an Aristotelian perspective, even though they may not articulate it as such. Aristotle wrote that every kind of thing has a telos—a specific essence, purpose or finality—that is “intrinsic to, constitutive of, and evaluative of the thing itself” [3,4]. For the philosopher, the telos of human beings is a life of reason integrated with good ethical character. Grandma has now lost the ability to reason and to act upon her good character. Under this Aristotelian construct, she is no longer fully human.
In another respect, patients and families hold an autobiographical understanding of humanity. Grandma authored a life narrative that preceded her hospital admission. She lived through the past ninety years of history, gained a wisdom that only comes with age, accomplished goals both great and small, raised a family with her husband, and spoiled her grandchildren. She had a vibrant personality—quick to tell a joke at the family dinner, angered by the injustices of society, and passionate about her faith. Sadly, however, Grandma has lost the ability to continue authoring her life narrative.
The physician should be able to guide the family in these circumstances. Unfortunately, the technological advancements of modern medicine cannot restore the telos of Grandma, nor can they restore her authorship. If these two essential aspects of humanity cannot be recaptured, then the stabilization of Grandma’s vital signs may not be a goal worth achieving—neither for Grandma, nor her family. In fact, most patients do not wish to unnecessarily prolong their lives in a strictly biological sense . If patients can no longer actualize who they truly are, most prefer to pass away in a respectable manner, in a comfortable place, at home, and surrounded by their family members [5,6]. The intensive care unit at an academic medical center could not be further removed from this ideal.
Before Grandma died, her code lasted for five hours and fifteen minutes. Her life did not have to end that way. If Grandma had a frank discussion with her family and physicians about the goal and value futilities of end-of-life care at a time before her terminal admission to the hospital, then Grandma may not have been the subject of this essay. Ideally, an essay of this sort might never exist at all. Regrettably, our healthcare apparatus does not value such intimate communication between physicians, patients and families, despite a growing body of evidence that demonstrates its significant contribution to high-quality, end-of-life care [7-9]. It therefore remains the responsibility of individual physicians to hold these types of discussions with their patients. Moreover, all of the involved parties should advocate strongly for this type of patient-centered care as our country enters a period of significant healthcare reform.
Commentary By Antonella Surbone MD, PhD FACP, Ethics Editor, Clinical Correlations
Dr. Mercuri’s insightful piece reminds us all that major philosophical theories underlie and shape all aspects of our lives, including the practice of medicine. He writes about Grandma and how her life ended. Whether we call it telos or purpose, each human life has one. Grandma’s life had purpose and meaning, while her dying seems to have lacked both.
What brought about such disconnect? Technology applied without proper judgment and practical wisdom (Aristotle’s phronesis) and the lack of communication between physicians and Grandma’s family.
As a result, the act to prolong her life became separated from the value of her life: technology took a life of its own, at the expenses of the only life that should have mattered: the one that Grandma had lived, enjoyed and suffered according to her personality and principles.
Multiple factors contribute to physicians’ inability or unwillingness to communicate with patients and their families, especially at the end of life. Some relate to what we learn and some to what we do not learn as medical students and then as young doctors in training. Through formal and hidden curricula, we learn about success rates, about never giving up, about using distance in the patient-doctor relationship to maintain scientific objectivity. Yet we are not taught about facing the many failures of modern medicine, or about valuing intimacy and connection with our patients, or about confronting and expressing our own uncertainties, fears, anxieties. We are also not taught enough that open ongoing communication with patients and families is the key to establish and maintaining trust in the patient-doctor relationship. At the end of our patients’ life, we often see the results of our inadequacy.
Training in communication skills could help us break the barrier of silence with patients and their families and engage in communication -a bidirectional process, not a simple unilateral act of information. The acquisition of culturally sensitive communication skills entails learning to choose our words carefully and to put aside medical terminology that may create misunderstandings. In Grandma’s case and in many similar ones, when we communicate with families under major distress and sorrow, we do not need to discuss with them the notion of medical futility. Rather, we wish to convey the simple fact that prolonging biologic life is not equivalent to prolonging Grandma’s life, because “Grandma is more than just a set of stable vital signs”, as Dr. Mercuri poignant essay tells us.
Understanding the metaphysics of futility, however, is very important for us physicians because it may help us alleviate the family’s suffering or their potential guilt, by engaging in talking about Grandma and her valuable life, rather than focusing on the details of her biological survival. Adequately trained physicians, along with spiritual and psychological advisors when appropriate, may connect with each patient and family to ease the patient’ s suffering at the end of life and to reduce the stress of family and caregivers.
It may be useful to remind ourselves that communication skills, cultural competence and global care, addressing the medical, psychosocial and spiritual concerns of each patient and family, are not only ideals of good clinical practice, but are now also requirements of patient-centered care.
Balestra D. Technology in a Free Society: The New Frankenstein, Thought, V. 65, June, 1990, (155-168)
John Mercuri is a 4th year medical student at NYU School of Medicine
Peer reviewed by Antonella Surbone, MD, PhD ethics editor, Clinical Correlations
Image courtesy of Wikimedia Commons
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2. Descartes, Rene. Discourse on Method and Meditations on First Philosophy. 4th Ed. Trans. Donald A. Cress. Indianapolis: Hackett Publishing Company, 1998. Pages 11, 35.
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