Abstract
By the end of a long conversation that same day, it became quite clear to us that Mrs. London understood that her brother had nearly no chance of leaving the CV-ICU in a conscious state, never mind riding his vintage Harley-Davidson or discussing Auburn football with his nephews. This degree of comprehension was quite an accomplishment given her exhausted state. When asked about her thoughts on the possibility of dialysis, Mrs. London told us that her mother suffered through dialysis the final three years of her life, and both she and her brother refused to live “with those machines” disrupting their lives. The attending ethicist let the nurse practitioner know that Mrs. London well understood her brother's declining health. In the late afternoon, the CV-ICU attending invited us to a meeting between Mr. Rivers' health care team and his extended family. All the services consulted as part of Mr. Rivers' CV-ICU care agreed that this meeting would be the appropriate time to discuss “withdrawing care” with Mrs. London and Mr. Rivers' loved ones. The various services calmly reported that Mr. Rivers' chances of regaining consciousness and leaving the hospital were infinitesimal; therefore, the best course of action would be withdrawing care. I remember looking to my right and seeing Mrs. London addled and concerned. She immediately asked the clinicians how they envisioned her brother's future care. The palliative care attending told Mrs. London that the team was suggesting that a DNR order ought to be placed, renal dialysis ought not begin, his VAD should be slowly weaned, and his sedation could be increased if needed. After a bit more discussion, the family agreed that these therapies would be best. Around 6:00 p.m., after Mr. Rivers' BiVAD had been shut off, Mr. Rivers' surgeon declared death. Mrs. London and a few other members of his immediate family were nearby.
After discussing what I considered a few essential ethical and methodological aspects of Mr. Rivers' story, I met with a senior faculty member to discuss my presentation. She suggested that I avoid saying “withdrawal of care,” as this phrase did not accurately describe what happened to Mr. Rivers—I realized that I agreed: while attempting to display a comfortable grasp of the technical jargon I heard in the clinic, I had adopted this phrase without noticing its inferred meanings. This ethicist also pointed out that Mrs. London's question shows that she was not sure what “withdrawal of care” entailed, despite her familiarity with the specific therapies. A year hence, I have stopped using the phrase withdrawal of care and the increasingly popular but still problematic phrase withdrawal of life sustaining/supporting therapy. I suggest hospital workers and scholars cease saying “withdrawal of care” in both medical literature and clinical contexts; also, the neologism withdrawal of life sustaining therapy may have a place in technical texts but not in the clinic.
When a patient stops receiving certain forms of mechanical or chemical therapies, this does not mean that care has ceased. Robert L. Fine has made this point, saying, “Sometimes we withdraw treatment but we never withdraw care.” 1 In Mr. Rivers' case, the family and his care providers decided to forego renal dialysis and slowly turn down the BiVAD, but “withdrawing care” did not occur. Indeed, I have never seen a nurse, physician, or social worker stop providing care after a certain machine had been shut off or a sedative had been increased. Mrs. London's CV-ICU experience shows that even well-meaning and competent nurses and doctors fall back on the phrase withdrawal of care in clinical settings without reflecting on the implications of their words. Proper end-of-life care involves continual care and support, and the phrase withdrawal of care fails to capture this process.
While clinicians continue saying “withdrawal of care” without reflection in the hospital, fortunately its use seems to be waning in academic publications. Scholars have been eschewing “withdrawal of care” in favor of some combination of three phrases: withdrawal of life support technologies, of life sustaining treatment, or of life preserving measures. These designations may be more accurate descriptions of responsible end-of-life care, but they seem problematic nonetheless, because these stock phrases remain vague and misleading. Although we find general agreement that life support measures refer to “any treatment that serves to prolong life without reversing the underlying medical condition,” the specific therapies this phrase designates vary greatly depending on the patient (AMA Opinion 2.20, 1986). Life sustaining treatments may include mechanical ventilation, artificial nutrition or hydration, sundry mechanical circulatory devices, chemotherapy, vasopressors, renal dialysis, and antibiotics; however, health care staff do not always categorize these therapies as life sustaining treatments. For example, when Mr. Rivers underwent his CABG, a mechanical ventilator was used, but not as a life sustaining measure. Given the diversity of this list, I could not simply say “life support technologies” and assume that an informed family member (or even another health care professional) understands the specific therapies I have in mind. For example, in some cases “life support” may be withdrawn, but antibiotics and artificial nutrition continued. As both the family and the health care team must be given additional, specific information, why not simply name the devices and medications that will cease or be increased?
Withdrawal of life support does not refer to a merely passive process of ushering in a natural death—whatever that may be. Clinical withdrawal of life support often includes increasing sedatives and pain reducing opioids. We act on the patient and the patient's family as the process of withdrawing life support occurs. Such phrases mislead insofar as they give the impression that the patient's future health care entails stopping old therapies without augmenting current treatments (or even beginning new procedures). With Mr. Rivers in mind, it seems especially important to remind his family that his doctors and nurses will continue to actively allay his physical pain. Even when hospital providers wish to convey the moribund nature of a patient's condition, it may be best to avoid words that give an impression of passivity.
Furthermore, these “life- …” phrases are euphemistic, as they presuppose that there is a life to be preserved or sustained. However, in what sense are patients like Mr. Rivers living? As Sharon Kaufman and others 2 have argued, our high-tech ICUs often structure the patient's final weeks, days, and hours in such a way that distinguishing life from death has become a difficult task for both providers and families. Mr. Rivers may be respiring, his heart may be beating, and his blood may be flowing; however, these assisted actions do not constitute human life in a common sense. Mr. Rivers is actually already dead. Although their families, friends, and caretakers may meaningfully interact with them, patients like Mr. Rivers cannot meaningfully interact with their loved ones. Life in a more honest sense requires meaningful interaction. As Mr. Rivers can no longer interact with his family and health care team, these machines and pharmaceuticals do not support Mr. Rivers' life: these technologies merely force his body to move.
So, why should we deem the constellation of machines and medicines used on a person with severe heart, cognitive, lung, blood pressure, and renal problems life supporting or life preserving measures? The life Mr. Rivers lead before entering the CV-ICU looked very different from the life sustained in the CV-ICU. The thin conception of human life these phrases promote reduces life to a series of observable chemical processes. In clinical settings, the expression “human life” should signify more than a physical existence.
When I encounter a patient whose life sustaining treatments are to be withdrawn, I see no downside in abjuring ambiguous and euphemistic stock phrases in favor of a concrete discussion concerning the specific machines and prescriptions that may be stopped or started, reduced or increased. Proper and responsible end-of-life care requires that the health care team clarify the processes involved in withdrawing life support measures. As such care includes telling loved ones what will happen to the patient, why use stilted phrases that are inaccurate, have to be clarified with additional details, may give the impression of passivity, and reduce the human life to biological subsistence?
I should conclude by readily admitting that these “life- …” phrases may have a place in medical literature. With technical papers, scholars have the luxury of speaking directly to other scholars, and they have the space needed to specify what specific therapies they include under life sustaining treatment. In clinical settings one is no longer solely in the company of scholars; instead, one speaks directly with patients and families. Therefore, such a phrase would be out of place. However, unlike these “life- …” phrases, the phrase withdrawal of care has no place in the clinic or in scholarship, as in both venues this designation misleads. I have tried, and will continue to try, to avoid using such labels when talking with families and clinicians in hospital settings.