atrocities is that they resulted not from a breakdown of morality or a sinister dive into evil but rather grew out of a “rational,” step-by-step ideological distortion of what it means to heal. They represented a “transmutation of values”4 that enabled medicalized killing to be seen as a therapeutic cleansing of the body politic and that allowed daily, bureaucratic medical tasks to be cut off from ethical reasoning.
The label “life unworthy of life” was initially used by the Nazi government to characterize the physically disabled and mentally ill to justify their coerced sterilization and murder.5 However, over time, its meaning was extended to people who were considered “racially impure,” culminating in mass killings at extermination camps.
Furthermore, central to Nazi grassroots health propaganda was one of Hitler’s maxims: “what is useful for the community has priority over what is useful for the individual” (Gemeinnutz geht vor Eigennutz). This view led to a medical ethos that not only favored paternalism but also a total disregard for the human person as an individual.6
The medical experiments performed by Nazi physicians on concentration camp prisoners over the course of World War II, as well as other abuses perpetrated by the medical profession, such as the Tuskegee Syphilis Experiment (in which treatment for syphilis was withheld from rural African-American men without their knowledge over a 40-year period), have left a legacy of distrust of the medical profession, especially when it comes to its treatment of the poor and other vulnerable populations.
Many aspects of the principles of modern American medical care may be viewed as correctives to 20th-century abuses in the medical profession. The historical experience of Nazi atrocities, some have argued, provides post-Holocaust physicians with an “absolute and infinite moral obligation to care for severely, chronically and non-rehabilitable sick individuals,”7 giving rise to a medico-legal system that protects life sedulously. In the arenas of cardiopulmonary resuscitation and intensive care, this sedulous protection of life has come to be called “erring on the side of life,” i.e., any chance to prolong a life tips the scale towards intervention.8
In the decades following the Holocaust, medical care in the US has also evolved from a paternalistic approach to one that emphasizes the patient and their autonomy. The principle of patient autonomy is generally understood to mean that physicians allow patients to make their own decisions regarding what interventions they will or will not receive. Closely tied to patient autonomy is the principle of informed consent, where the physician shoulders responsibility for informing the patient of the nature of the intervention, risks and benefits, and reasonable alternatives but afterwards leaves the burden of final decision-making to the patient (or their surrogate decision-makers). In the mid-20th century, “erring on the side of life” became medical dogma. Patient autonomy, informed consent and the overarching theme of “patient-centered care” became fundamental, unquestioned tenets of the practice of modern medicine.
However, I argue that a dogmatic adherence to these principles is not unlike the blind obedience of Nazi physicians to the distorted ideologies of “healing” the Volk or people at the expense of the individual and that the tenets of modern medicine, when adopted without a more thoughtful consideration of their consequences, may ultimately lead to more harm than good. Evidence for this may be especially salient in the ICU setting, where physicians may be unwilling to make strong recommendations regarding end-of-life care for fear that they will cause depression, take away hope, or approach the slippery slope of assigning value to a person’s life. As a consequence, studies have shown that 50% of patients with lung cancer live to within two months prior to death before being presented with hospice as an option.9 Up to 60% of oncologists prefer not to discuss advanced medical directives, code status, or even hospice until all treatments have been exhausted.10
As a result, patients with terminal or life-threatening conditions lose time with their families or for reflection, and spend more time in the hospital and ICU.11 For physicians, performing resuscitative interventions on terminally ill patients or those likely to have a poor prognosis also presents a significant source of moral distress.12 Moreover, despite great strides that have been made in increasing referrals to hospice facilities and palliative care and in formalizing patient-physician discussions around end-of-life preferences and advanced directives, such care continues to be characterized by aggressive medical intervention as well as runaway costs. Of the close to $554 billion spent by Medicare in the year 2011, 28% (about $170 billion) was spent on patients in the last six months of life.13
The history of medical abuse perpetrated by the Nazis certainly serves as a humbling reminder to remain thoughtful and to engage in a constant reevaluation of our actions as moral agents in our daily work. It also, however, serves as a cautionary tale to take the crucial step that Nazi physicians failed to, which is to question the prevailing medical orthodoxies and ideologies when we sense that they may be wrong. In the context of modern-day medicine, being ethical means continuously reanalyzing and reorienting ourselves regarding the concepts of patient autonomy and patient-centered care. Confronted with the preceding data about ICU and end-of-life care, an essential question that we as physicians should ask ourselves is: what is our role, and what can we do to become better at caring for patients at the end of their lives?
In the ICU, concepts of autonomy and informed consent become problematic when the physician-patient discussions focus on specific interventions rather than overarching goals of care. Code status discussions most often take the form of asking patients questions such as: “do you want me to pound on your chest or put a tube down your throat to help you breathe?” Even when patients decline heroic or invasive resuscitative measures, they are challenged to make decisions about a bewildering array of other medical interventions. Observational studies have documented physicians asking specific questions such as: “do you want an insulin drip?” “If we turn off the insulin drip, are you OK if we don’t check blood sugars?” and “do you still want antibiotics even if we’re not drawing labs?”14 Although it adheres to the rules of informed consent and patient autonomy, this approach fails to recognize that most patients and families have no basis on which to make these decisions, and it leaves them shouldering the responsibility for end results that would have occurred regardless of their decisions.
In the transformation of medicine from a paternalistic practice to a patient-centered one, physicians have struggled to define the boundary between where their clinical decision-making ends and patient autonomy begins. In an essay published posthumously in the New England Journal of Medicine (NEJM), Franz Ingelfinger, a former editor of
9 Haiden Huskamp, Nancy Keating, Jennifer Malin, et al., Discussions with Physicians About Hospice Among Patients with Metastatic Lung Cancer, “Archives of Internal Medicine”, 169(10) (2009): 954.
10 Nancy Keating et al., Cancer Patients' Roles in Treatment Decisions: Do Characteristics of the Decision Influence Roles?, ”Journal of Clinical Oncology”, 28(28) (2010): 4364-4370.
11 Sarah Harrington and Thomas Smith, The Role of Chemotherapy at the End of Life: ‘When Is Enough, Enough?’, “The Journal of the American Medical Association”, 299(22) (2008): 2667.
12 Elizabeth Dzeng, Alessandra Colaianni, Martin Roland, et al., Moral Distress Amongst American Physician Trainees Regarding Futile Treatments at the End of Life: A Qualitative Study, “Journal of General Internal Medicine”, 31(1) (2015): 93-99.
13 End-of-Life Care: A Challenge in Terms of Costs and Quality, “KHN Morning Briefing”, June 4, 2013.
atrocities is that they resulted not from a breakdown of morality or a sinister dive into evil but rather grew out of a “rational,” step-by-step ideological distortion of what it means to heal. They represented a “transmutation of values”4 that enabled medicalized killing to be seen as a therapeutic cleansing of the body politic and that allowed daily, bureaucratic medical tasks to be cut off from ethical reasoning.
The label “life unworthy of life” was initially used by the Nazi government to characterize the physically disabled and mentally ill to justify their coerced sterilization and murder.5 However, over time, its meaning was extended to people who were considered “racially impure,” culminating in mass killings at extermination camps.
Furthermore, central to Nazi grassroots health propaganda was one of Hitler’s maxims: “what is useful for the community has priority over what is useful for the individual” (Gemeinnutz geht vor Eigennutz). This view led to a medical ethos that not only favored paternalism but also a total disregard for the human person as an individual.6
The medical experiments performed by Nazi physicians on concentration camp prisoners over the course of World War II, as well as other abuses perpetrated by the medical profession, such as the Tuskegee Syphilis Experiment (in which treatment for syphilis was withheld from rural African-American men without their knowledge over a 40-year period), have left a legacy of distrust of the medical profession, especially when it comes to its treatment of the poor and other vulnerable populations.
Many aspects of the principles of modern American medical care may be viewed as correctives to 20th-century abuses in the medical profession. The historical experience of Nazi atrocities, some have argued, provides post-Holocaust physicians with an “absolute and infinite moral obligation to care for severely, chronically and non-rehabilitable sick individuals,”7 giving rise to a medico-legal system that protects life sedulously. In the arenas of cardiopulmonary resuscitation and intensive care, this sedulous protection of life has come to be called “erring on the side of life,” i.e., any chance to prolong a life tips the scale towards intervention.8
In the decades following the Holocaust, medical care in the US has also evolved from a paternalistic approach to one that emphasizes the patient and their autonomy. The principle of patient autonomy is generally understood to mean that physicians allow patients to make their own decisions regarding what interventions they will or will not receive. Closely tied to patient autonomy is the principle of informed consent, where the physician shoulders responsibility for informing the patient of the nature of the intervention, risks and benefits, and reasonable alternatives but afterwards leaves the burden of final decision-making to the patient (or their surrogate decision-makers). In the mid-20th century, “erring on the side of life” became medical dogma. Patient autonomy, informed consent and the overarching theme of “patient-centered care” became fundamental, unquestioned tenets of the practice of modern medicine.
However, I argue that a dogmatic adherence to these principles is not unlike the blind obedience of Nazi physicians to the distorted ideologies of “healing” the Volk or people at the expense of the individual and that the tenets of modern medicine, when adopted without a more thoughtful consideration of their consequences, may ultimately lead to more harm than good. Evidence for this may be especially salient in the ICU setting, where physicians may be unwilling to make strong recommendations regarding end-of-life care for fear that they will cause depression, take away hope, or approach the slippery slope of assigning value to a person’s life. As a consequence, studies have shown that 50% of patients with lung cancer live to within two months prior to death before being presented with hospice as an option.9 Up to 60% of oncologists prefer not to discuss advanced medical directives, code status, or even hospice until all treatments have been exhausted.10
As a result, patients with terminal or life-threatening conditions lose time with their families or for reflection, and spend more time in the hospital and ICU.11 For physicians, performing resuscitative interventions on terminally ill patients or those likely to have a poor prognosis also presents a significant source of moral distress.12 Moreover, despite great strides that have been made in increasing referrals to hospice facilities and palliative care and in formalizing patient-physician discussions around end-of-life preferences and advanced directives, such care continues to be characterized by aggressive medical intervention as well as runaway costs. Of the close to $554 billion spent by Medicare in the year 2011, 28% (about $170 billion) was spent on patients in the last six months of life.13
The history of medical abuse perpetrated by the Nazis certainly serves as a humbling reminder to remain thoughtful and to engage in a constant reevaluation of our actions as moral agents in our daily work. It also, however, serves as a cautionary tale to take the crucial step that Nazi physicians failed to, which is to question the prevailing medical orthodoxies and ideologies when we sense that they may be wrong. In the context of modern-day medicine, being ethical means continuously reanalyzing and reorienting ourselves regarding the concepts of patient autonomy and patient-centered care. Confronted with the preceding data about ICU and end-of-life care, an essential question that we as physicians should ask ourselves is: what is our role, and what can we do to become better at caring for patients at the end of their lives?
In the ICU, concepts of autonomy and informed consent become problematic when the physician-patient discussions focus on specific interventions rather than overarching goals of care. Code status discussions most often take the form of asking patients questions such as: “do you want me to pound on your chest or put a tube down your throat to help you breathe?” Even when patients decline heroic or invasive resuscitative measures, they are challenged to make decisions about a bewildering array of other medical interventions. Observational studies have documented physicians asking specific questions such as: “do you want an insulin drip?” “If we turn off the insulin drip, are you OK if we don’t check blood sugars?” and “do you still want antibiotics even if we’re not drawing labs?”14 Although it adheres to the rules of informed consent and patient autonomy, this approach fails to recognize that most patients and families have no basis on which to make these decisions, and it leaves them shouldering the responsibility for end results that would have occurred regardless of their decisions.
In the transformation of medicine from a paternalistic practice to a patient-centered one, physicians have struggled to define the boundary between where their clinical decision-making ends and patient autonomy begins. In an essay published posthumously in the New England Journal of Medicine (NEJM), Franz Ingelfinger, a former editor of
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