You are the surgeon on call and receive a request for consult from the emergency department (ED). A 93-year-old woman with Alzheimer’s dementia is presenting from a nursing home with two days of progressively worsening left lower quadrant pain, now diffusely peritonitic on exam. Her past medical history includes congestive heart failure with an ejection fraction of 20 percent following a myocardial infarction three months ago, as well as chronic obstructive pulmonary disease treated with at-home oxygen. A computed tomography scan reveals grossly perforated sigmoid diverticulitis with free intra-peritoneal air. The patient’s granddaughter, who is her health care proxy, arrives in the ED just as you do.
How do you approach the conversation with the granddaughter? Do you offer her a choice between an attempted sigmoid resection and comfort care, or do you simply express your condolences, discuss the value of palliative care, and admit the patient for pain control and comfort measures? Many surgeons likely would feel pressure to offer the option of surgery despite the patient’s grave prognosis.
The National Academies of Sciences, Engineering, and Medicine (previously the Institute of Medicine) defines patient-centered care as “providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.”1 Arguably unreasonable treatment plans are now often enacted when requested by the patient in the name of “patient-centered care.” In fact, these kinds of decisions and plans can be considered “patient-driven care.” They infringe upon the autonomy of physicians who must actively participate in medical decision making, functioning as clinical and moral agents—not simply “hired hands.”2 Thus, a sophisticated notion of patient-centered care should reflect the importance of a patient’s wishes and respect his or her agency, while simultaneously remaining rooted in scientific evidence and supported by the physician’s experience and expertise.
A 2014 article by Martin and colleagues illustrates the reliance on patient-driven care despite the knowledge that it often leads to an inadvisable course of action. In a survey of 375 members of the Eastern Association for the Surgery of Trauma, 92 percent of whom were physicians, 65.5 percent of the respondents reported relying on the wishes of family members most or all of the time in making end-of-life decisions; however, 79.9 percent reported a belief that families are rarely or only sometimes in an appropriate state to aid with these decisions.3 These results suggest discordance between medical opinion and patient or surrogate preferences. How do we close this gap?
The human condition
Patients and their families require expert guidance in high-stakes surgical decision making due to a lack of medical knowledge and because the human condition can obscure rational thinking. Part of the “human condition” can be considered the natural inclination to survive. On an instinctual level, death is never the answer, and humans want to play the odds, even when unfavorable. This basic innate response often inhibits families from making logical end-of-life decisions; even when faced with certain mortality, survival with significant pain and suffering is often still considered better than death. This decision-making process is amplified when a proxy decision maker is involved, in part because, in many cases, that proxy has nothing to lose in choosing aggressive care.
The fallacious belief that one can “beat the odds” has been described through the “prospect theory” of psychologist and Nobel Prize-winner Daniel Kahneman, PhD. Originally applied to economics, prospect theory can be applied to difficult choices in surgery.4 Although humans tend to be risk-averse when presented with a situation that involves sure gains (that is, most would rather take a sure $900 than a 90 percent chance of $1,000), they tend to be risk-seeking when presented with a situation that involves sure loss (that is, most would rather take a 90 percent chance of losing $1,000 than a sure loss of $900). A related principle, the principle of diminishing sensitivity, further explains human nature. In this theory, the same incremental loss is viewed as smaller when the overall scale is larger (that is, the difference between $900 and $1,000 seems smaller than the difference between $100 and $200).
Both of these principles may be applied to surgical decision making. The human tendency to be risk-seeking is illustrated by the choice to pursue surgery with a 95 percent chance of painful death instead of selecting comfort care with a 100 percent chance of a comfortable death. The principle of diminishing sensitivity further reinforces the bias; when both outcomes involve death, it is difficult to appreciate the true value of added pain.
Another factor that influences patients and surrogates is a common societal perception that one must do everything, up to and including the most aggressive treatments, to save a patient even when the steps are of questionable benefit. Unfortunately, this expectation has become a cultural norm that colors many Americans’ interpretation of what it means to do the right thing. However, when a patient approaches the point at which aggressive treatments cause more suffering than benefit, they may no longer be in the interest of every patient.
A 2015 study regarding patient perspectives of surgical decision making addressed the issue of surgery versus palliative care.5 Elderly patients were convened in focus groups, presented with a case of surgical futility (a tender thoracoabdominal aneurysm in a 79-year-old woman with multiple comorbidities), and asked to discuss their own hypothetical decision-making process. The group choosing surgery expressed a perceived imperative to choose life. They cited reasons including leaving their fate up to God and the guilt they would feel toward their families if they were to choose death. They felt the need to choose surgery to demonstrate a will to live.
An erroneous belief in the omnipotence of medicine is another potential hazard in patient decision making. In the 2015 study, some members of a panel of 37 elderly patients “struggled to believe that medical technology had nothing else to offer.” Furthermore, they believed that if they were to die, they would die in the operating room, which they thought would be a quick and painless death, despite being told that a scenario involving a prolonged intensive care unit death was more likely.5
An understanding of basic human tendencies should motivate physicians to carefully reflect before offering patients potentially futile options. A surgeon may feel that, for the sake of transparency, the patient or family should be informed of less advisable options; however, desperate families and patients rarely appreciate nuance and caveats. The therapeutic misconception permeates both clinical and research contexts.6 How can a treatment be futile if a physician is offering it? Being realistic and understanding the human condition, a surgeon cannot blame patients for choosing such options. Rather than depending on the patient and family to make difficult decisions, surgeons should accept more responsibility for defining futility and be more conservative in offering high-risk/low-benefit procedures.
Defining surgical futility
Two criteria should be used to define futility: first, the clinician must define a successful outcome; second, he or she must determine the level of certainty that the outcome will occur. A successful outcome is one that provides a clinical benefit and must align with the patient’s self-defined goals of care. It cannot be stressed enough that the goals of care are determined largely by the patient. Some medical ethicists have proposed a physiologic definition of futility, such as an inability to keep a heart beating or maintain blood pressure.7 However, such reductionist approaches ignore the broader goal of medicine. Procedures that ultimately will not improve the patient’s well-being—as defined by the patients and their families—are futile. Treatments should only be considered non-futile if they have the potential to either improve quality of life or prolong life.8
The more difficult part of defining futility is determining how certain a clinician should be that a treatment will achieve one of these goals. It is impossible to make such estimations an exact science, but we propose that clinicians start with a reasonable threshold in mind and adjust it according to the situation. For example, if a treatment is estimated to be successful less than 5 percent of the time, perhaps it should be considered futile. This threshold is admittedly arbitrary but can serve as a starting point. Because every case is different, surgeons should consider the impact of the particular circumstances. For example, it may be more reasonable to provide an operation with only a 2 percent to 3 percent success rate to a 17-year-old healthy male than to provide an operation with a 10 percent success rate to an 86-year-old male with a cardiac history and a previous stroke. Health care professionals should use realistic criteria to make rational decisions, keeping in mind that such statistics are likely to elicit inappropriate optimism in patients and families.
Surgical diseases have an additional consequence—namely that operations have a significant risk of additional pain, disability, and suffering for the patient. Thus, an important factor to consider in determining futility should be the possibility of doing harm. A high probability of inflicting significant pain and suffering with a poor chance of a successful outcome should render a procedure futile.
Physicians must assess futility from the medical standpoint before engaging patients. Part of this assessment requires patient insight and input—specifically, the patient’s definition of a successful outcome. However, assessing potential harm and interpreting the likelihood of a successful outcome should be performed by the skilled physician and not the untrained patient or proxy. A definition of mutual decision making should be just that—mutual. Patients often appreciate appropriate guidance from the physician.9
It should be noted, however, that physicians are subject to a “condition” of their own. Surgeons, in particular, are apt to focus primarily on a “cure” from the technical standpoint, rather than taking a step back and looking at the big picture. As such, a shift in training and practice for many surgeons is necessary. More specifically, surgeons should be educated about the goals and ideals of palliative care medicine and encouraged to use these services more often.
Physician and surgeon incentives, financial and otherwise, also must change. In a case such as the one described at the beginning of this article—a 93-year-old woman with Alzheimer’s dementia and a medical history that includes congestive heart failure—the surgeon is less apt to provide nonoperative treatment. Although he or she will spend the same amount of time on the operation as it would to take to meet and discuss care planning with the family, the latter activity would only pay a fraction of the potential procedural fee.
Nonoperative planning also requires skilled communication with a humanistic approach. Many surgeons lack adequate training in how to discuss this form of patient care. Thus, surgeons will need to develop a new skill set so that discomfort does not prevent them from participating in appropriate palliative care conversations. These conversations should be patient-centered but not patient-driven. They should be time-sensitive, but not rushed—particularly since research suggests increased communication leads to greater patient satisfaction and a decrease in futile treatments.10,11
In the words of Hippocrates, the physician is sometimes mandated to “refuse to treat those who are overmastered by their disease, realizing that in such cases medicine is powerless.”12 In these cases, we hope that surgeons will resist offering futile options and focus more on compassionately guiding patients and their families through the difficult process of end-of-life care.
- Kohn LT, Corrigan JM, Donaldson MS. Crossing the Quality Chasm: A New Health System for the 21st Century. National Academy of Sciences. March 2001. Available at: www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2001/Crossing-the-Quality-Chasm/Quality%20Chasm%202001%20%20report%20brief.pdf. Accessed September 6, 2016.
- Callahan D. When self-determination runs amok. The Hastings Center Report. 1992;22(2):52-55.
- Martin ND, Stefanelli A, Methvin L, et al. Contrasting patient, family, provider, and societal goals at the end of life complicates decision making and induce variability of care after trauma. J Trauma Acute Care Surg. 2014;77(2):262-267.
- Kahneman D, Tversky A. Prospect theory: An analysis of decision under risk. Econometrica. 1979;47(2):263-291.
- Nabozny MJ, Kruser JM, Steffens NM, et al. Constructing high-stakes decisions: It’s better to die trying. Ann Surg. 2016;263(1):64-70.
- Appelbaum PS, Roth LH, Lidz C. The therapeutic misconception: Informed consent in psychiatric research. Int J Law Psychiatry. 1982;5(3):319-329.
- Truog RD, Brett AS, Frader J. The problem with futility. New Engl J Med. 1992;326(23):1560-1564.
- Schneiderman LJ, Jecker NS. Futility in practice. Arch Intern Med. 1993;153(4):437-441.
- Branch WT. The ethics of patient care. JAMA. 2015;313(14):1421-1422.
- McDonagh JR, Elliot TB, Engelberg RA, et al. Family satisfaction with family conferences about end-of-life care in the intensive care unit: Increased proportion of family speech is associated with increased satisfaction. Crit Care Med. 2004;32(7):1484-1488.
- Majesko A, Hong SY, Weissfeld L, White DB. Identifying family members who may struggle in the role of surrogate decision maker. Crit Care Med. 2012;40(8):2281-2286.
- Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility: Response to critiques. Ann Intern Med. 1996;125(8):669-674.