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• W2094433010 abstract "The case and analysis by Abadir and colleagues presents a perceptive depiction of a patient's last days, during which she received aggressive therapy despite an advance directive (AD) indicating wishes to the contrary.1 Their contribution, which adds to the growing body of literature describing the failure of the AD to improve care,2, 3 demonstrates how the AD can create misunderstandings and distrust that, although extreme in this case, are more generally symptomatic of its underlying structure built on the foundation of the resuscitation question. This question, concerning the treatment of future cardiac arrest, evolved at a pivotal crossroads in the history of medicine and the development of its relationship to the technology of life- sustaining treatments and the movement to involve patients in decision-making about their future. Because of their important historical context, the therapy of cardiopulmonary resuscitation (CPR) and the order to forgo it, the do-not-resuscitate (DNR) order, have taken on a constellation of important symbolic meanings that are often different for patients, their families, and the healthcare team. These disparate meanings can then serve to hijack discourse about prognosis and the possibility of actual therapies, in this case a potentially therapeutic trial of intubation that required a thoughtful weighing of burdens and benefits, and instead encourage an all-or-nothing approach informed by the hypothetical of future resuscitation. In a previous editorial in this journal and elsewhere,4, 5 I called for a reconsideration of the default application of CPR, which would make the DNR order obsolete, but because of the significant history of CPR and the DNR order,6 this eventuality remains far off. In following the highly endorsed practice of establishing the DNR order far in advance and vividly depicting the resultant contentious outcome, this case suggests a procedural shift that holds the promise of diminishing the symbolic power of DNR and CPR and their malignant effect on discourse—the relocation of the resuscitation question to later in care, not sooner! A brief review of the significant history of CPR, DNR, and the AD can offer insight into their contemporary meanings and practice. Soon after the DNR order was established as the first codified limitation of therapy7 and a call for patients and families to make the decision,8 the states, beginning with California in 1977, created Natural Death Acts to establish the legality of living wills so that patients could make this decision in advance.9 The desire to respect autonomy and involve patients while they still possess decision-making capacity led to the call for initiating discussions about the termination of treatment when patients are first diagnosed with potentially terminal conditions.10 In response to the rare use of living wills, their vague language and emphasis on stopping therapies, the “medical directive,” which laid out a series of potential future scenarios and interventions, was proposed in 1989.11 Respecting its history as the first “life-prolonging” therapy decision to be made in advance and perhaps because of the implications of that decision, the medical directive and all subsequent ADs list the CPR question as the first choice to be made. The new proposed health reform law, promising incentives for doctors engaging in AD discussions as part of a clinic visit, will potentially move the DNR question to an even earlier point in patients’ lives.12 From early in its history, there was some awareness that the meaning and implications of the DNR order would be broader than simply not performing CPR in the event of cardiac arrest. The indication to perform CPR in the hospital was evolving even before the technique was established in the 1960s, when open cardiac massage was the procedure of choice, and “death” was stipulated as the indication.13 Given this indication, it is not surprising that the order to withhold this treatment would carry meanings about impending death and helps explain why the DNR order is written mostly for patients who are expected to die soon, despite substantial efforts to the contrary. When the President's Commission on Ethics directed that “any DNR policy should ensure that the order not to resuscitate has no implications for any other treatment decisions”14 in 1983, it expressed an aspiration that transcended the power of policy, as indicated by later empirical evidence—that the DNR order had other important implications.15-18 Despite its compelling history and evidence to the contrary, many still faithfully insist that DNR means only forgoing resuscitation. Moving the AD decision earlier means that the question of the desirability of future CPR, a question rich in historical symbolic meanings and implications, will be used as an organizing principle for difficult discussions about negotiating future care with patients who are not dying, at least not in the near future. An irony of this practice is that CPR is largely impotent as a therapy to substantially alter most disease trajectories. Most other therapeutic decisions that arise in the course of a patient's illness are much more important for patients and families than future CPR. As far as its real power, CPR can act as a symbolic performance, which signifies caring for some and is thankfully over in a relatively short time period.19, 20 In addition, “the prompt use of CPR has enabled lives to be saved which previously might have been lost,”21 albeit in an extremely narrow range of circumstances,22 and all too often the life saved is left devastated. In addition to lack of efficacy, it is this latter, dreaded outcome that no doubt drives much of the urgency that healthcare workers and some patients feel to enact DNR orders and to obtain them sooner rather than later. In its current form, with the persistent focus on the code question, the AD tends to be reduced to a binary approach for future health care; one escapes being a hostage of technology by choosing DNR or one is full code and subject to “everything”—unless one has specifically opted out. The case offers an example of how the code decision tends to subsume other therapies, although their benefits and burdens may still be contested and unsettled. Although the increasingly packed AD appears on its face to be a more-nuanced approach to decision-making, by starting with the question of DNR, the focus remains on code status and leaves the other, more-immediate and important choices, such as intubation, necessarily blurred. This binary or all-or-nothing approach fostered by the AD, which the multiple meanings of the DNR further complicate, is well represented in our case and is iconic of similar scenarios of divisiveness that are all too common. The older patient in her desire to escape the burden of futile, default therapies chooses a DNR/do-no-intubate (DNI) order. Her family, aware of the symbolic power of DNR in limiting other therapies, questions whether the patient truly appreciated this meaning and reacts with distrust of the healthcare team by demanding more therapies. The healthcare team sees the patient's DNR and DNI orders as representing a moment in which she exerted her autonomy to control her future and are therefore doubly frustrated—not only do they feel forced to provide apparently “futile” therapy, such as prolonged intubation and dialysis, this care also represents a breach of the patient's autonomy. So we have the family on one side, most of the healthcare team on the other, and the patient, as represented by her AD or her daughters, stuck in the nebulous middle. In Ms. GF's case, the AD left little space for a practice in which trials of therapies that may have track records for successfully treating a given condition or circumstance can be offered and possibly applied and then withdrawn when they succeed or not. Might the patient have agreed to intubation as a therapeutic trial if she had understood that it might help her and that she would not be left to languish if it did not? Instead of seeking to resolve decisions about code status earlier, when there are still so many more-pressing questions, one way to diminish the inordinate and diverting symbolic power of CPR and DNR on decision-making about the future is to make them later, much later. The response to cardiac arrest when it happens should be among the last things we think about and discuss with the relevant parties before a patient dies. This is not a call for a return to the bad old days when doctors did not discuss with their patients what was happening now or what might happen in the future, but it is a recognition that the “code discussion” is not really much better; that is, it has proven to be an exceptionally inadequate proxy for discussions about future care, effectively replacing real discourse about therapeutic options with talk of an outmoded response to death and a signed document that gives healthcare practitioners full license to do what they think best or an unsigned document that testifies to a patient's unwillingness to yield. To the contrary, we should be more proactive about assessing, prognosticating, and discussing the advisability of therapies that might be beneficial, now and in the future, but we should do this separately from the code decision so that it does not divert attention and encourage all-or-nothing approaches, as it currently does. This does buck the trend of the more-widespread deployment of ADs for patients before hospitalization, as encouraged by the proliferation of forms like the Physician Order for Life Sustaining Treatment—forms that meet the bureaucratic needs of ADs but simply perpetuate the problems inherent in DNR. Ultimately, chronically and gravely ill patients and their families desperately desire balanced input about potential therapies so that they can make informed decisions. Some patients will reach the point when they no longer want to receive any therapeutic (nonpalliative) intervention, no matter what its benefits, and this desire should be respected through the establishment of clear directives, but before that, patients usually desire to try therapies that have a potential to help them, and what these may be is difficult to know far in advance. Some patients or their families, motivated by their interpretation of religious doctrine or distrust of those caring for them, or just because, may continue to demand “everything” until the end, despite the apparent medical futility. What to do in these cases will remain a vexing problem, but if we were able to restructure these conversations to emphasize the possibilities when they exist and to change some of the symbolic meaning of CPR and DNR, perhaps these scenarios would arise less frequently. Given its rationale, when Ms. GF was finally extubated, the answer to the question of what to do in the event of her approaching cardiac arrest was fairly obvious. She died without undergoing CPR. So too, for the vast majority of patients, the response to cardiac arrest should depend on the circumstances preceding that moment. This patient already had a DNR order, so withholding CPR followed the standard of care and fulfilled quality measures for end-of-life care. Perhaps at some time in the future we will be able to admit to ourselves and to our patients that the degree of uncertainty surrounding what will happen when most patients develop cardiac arrest is too low for the code question to be considered an important moment of patient autonomy. For now, the best we can do, and a practice I have adapted in the recent past with only mild procedural glitches, is to keep caring for the patient, with the goal of care being to diagnose and treat her various conditions; to balance the risks and burdens of interventions with their benefits in collaboration with the patient and her family; and finally, to make sure that, after all nonpalliative therapeutic decisions have been exhausted and the end is near, the patient, or her family, makes a decision about code status. When the code decision is made later and not sooner, the DNR order loses its power to influence prior therapeutic decisions, and its meaning can be reclaimed from the existing host of symbolic meanings and made clearer to all involved, as an acknowledgement of an individual in whom no other nonpalliative therapies are viable and who may die soon. Perhaps, some time in the future, when the meaning of DNR becomes uncontested, we may be ready to make the fundamental changes in the care of chronically and gravely ill people that obviate the need for it at all. I would like to acknowledge my longtime collaborators, Geoffrey Rees and Caitjan Gainty, for their unerring insights, helpful criticism, and sharp editorial work. Samantha Fenno and Eric Reinhart provided valuable editorial assistance. Conflict of Interest: The editor in chief has reviewed the conflict of interest checklist provided by the author and has determined that the author has no financial or any other kind of personal conflicts with this paper. Author Contributions: Brauner D: Concept, research, preparation of manuscript. Sponsor's Role: The Greenwall Foundation did not influence in any way the concept, research, or preparation of this manuscript. The Greenwall Foundation helped fund some of the preparation of this manuscript." @default.
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• W2094433010 date "2011-12-01" @default.
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• W2094433010 title "Later Than Sooner: A Proposal for Ending the Stigma of Premature Do-Not-Resuscitate Orders" @default.
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