Bound by a Promise: Advance Directives and “Uninformed Consent”

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“But it is too solemn—I think it is not right—to make a promise when I am ignorant what it will bind me to.”

Dorothea Casaubon, from George Eliot's Middlemarch

Up to the day of surgery, Mr Miller's^⁎ chart read like most medical charts. Preoperative cardiac evaluation by primary care: check. Anesthesia preoperative note: check. Consent for surgery: check. Consent for transfusion: check. Inventory of belongings: check. Advance directive on file: check.

Mr Miller's advance directive would have remained a footnote in the medical chart if his surgery had gone smoothly. He hoped it would, apparently, having told his family that he just had a “spot” which needed to be removed. However, during the removal of what actually was a large abdominal cancer, he suffered a prolonged cardiac arrest. His advance directive soon became the center of attention.

We met Mr Miller a few months before his surgery when he was referred to our nephrology clinic for unexplained weight loss and worsening kidney function. At that time, he confided that he had been having difficulty coping recently. He was confident the decline in his health was simply a matter of stress and lost appetite, but he agreed with hesitation to undergo the evaluation we recommended. We ordered the abdominal ultrasound to be thorough; social stressors seemed to us to be the most likely explanation as well. We had all but discharged him from our clinic when the massive tumor was discovered.

We informed him of the findings, and prepared ourselves mentally to console him. We were ready to offer him an outlet for his frustrations, his anger, his sadness, or whatever deluge of emotion was ahead. It was a diagnosis that seemed undeserved, delivered with timing that was perfectly cruel. To our surprise, he met our words with quiet acceptance, and received his diagnosis with dignity and a sense of calm we did not expect. The appropriate referrals were made, and it seemed our services would no longer be necessary.

The evening following surgery, we became involved in his care once again, when we were asked to provide urgent dialysis in the setting of his multiorgan failure after cardiac arrest. His daughter, whom he had previously designated as surrogate decision maker, was distressed and angry at her now critically ill father for downplaying the recent health-related events in his life, including his cancer diagnosis. She had never had the opportunity to talk with him about what he might want in the setting of a health crisis.

After a period of intensive care and medical stabilization, it seemed that she would never have that opportunity. He had suffered severe anoxic brain injury during the arrest. Following the usual battery of neurologic tests to determine the extent of nervous system dysfunction, the neurologic prognosis was deemed—at best—an irreversible persistent vegetative state. He would remain ventilator dependent and without kidney function. More importantly, we knew he would never again be capable of communicating with his loved ones, leaving his hospital bed, or making another conscious decision. The recommendations of the ICU team and neurologists were in concordance at that point: further intensive support was futile and comfort measures would be appropriate.

Among the multiple teams of physicians involved in his care, we were the only ones to have known Mr Miller outside the inpatient ward. We had seen him walking into the clinic of his own volition. We had heard him express concern about his family. The sight of him in his hospital bed, staring vacantly at the ceiling, reliant on the nursing staff for every basic need, was unnerving. This was not the same man who had come to our clinic. To us, continuation of life support seemed beyond futile.

The medical facts and our opinions were presented to Mr Miller's daughter. She had clearly been uncomfortable with the idea of withdrawing care, and searched for a sign of what her father might have wanted. She found guidance in the advance directive her father had signed—at the time of a minor procedure several years prior—which outlined his wishes in case of a poor outcome. This standard form, used throughout our large national health care organization, contained several statements with multiple possible responses. The following was notably important: after the statement, “If I am unconscious, in a coma, or in a persistent vegetative state and there is little or no chance of recovery,” Mr Miller had checked the following box: “Yes. I would want to have life-sustaining treatments.”

This was sufficient information for Mr Miller's daughter to come to a conclusion. Acting in place of her father, she elected to pursue ongoing intensive support, including mechanical ventilation, tracheostomy, gastrostomy, and hemodialysis. This decision, she reasoned, was most consistent with what he would have wanted.

And yet the same advance directive, on the very same page, posed less extreme scenarios. “If I have a permanent condition that makes me completely dependent on others for my daily needs (for example, eating, bathing, toileting)” as well as “If I am confined to bed and need a breathing machine for the rest of my life” had both drawn a response of “[my wishes] would depend on the circumstances.”

It was unclear to us what to make of Mr Miller's true wishes from these seemingly contradictory choices. The patient's daughter saw them as an absolute; we were far less certain. We were uncomfortable ceding control to a set of directives that we did not understand, especially when those directives were in express contradiction to accepted practice guidelines and our own sense of medical futility. In 2000, the Renal Physicians Association and American Society of Nephrology published a clinical practice guideline, entitled Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis, to assist nephrologists with similar dilemmas. These guidelines suggest that dialysis be considered “medically inappropriate” in cases of persistent vegetative state. Having known Mr Miller, we felt an even greater obligation to avert ongoing life support in order to preserve his dignity. His loved ones, however, were suspicious and resentful when we attempted to explain our reservations.

In this case, the advance directive, intended to ease decision making, became a source of pointed conflict and achieved none of those aims for which it was created. Unfortunately, the advance directive form at our institution, as at many others, provides a set of options that allow for illogical choices to be made. The clear implication of offering a choice is that the choice will be honored; otherwise, why give the option? It now also seemed to obligate us to provide treatments that conflicted with our professional obligations and ethical convictions.

Many advance directives and similar documents have adopted more flexible and careful phrasing, including California's Living Will, which offers the choice of prolonging life “as long as possible within the limits of generally accepted health care standards.” Such phrasing better conveys a patient's wishes without giving the impression that the medical team is obligated to provide all possible interventions. In this case, the phrasing of the standard advance directive form offered a blank check for “life-sustaining treatments”—a selection that our patient made. While at the time this seemed simply to be the routine completion of a generic form, offering Mr Miller this choice laid the groundwork for a conflict that should have been avoidable. After all, the way his family saw it, he had made a choice, and we had entered into a binding contract, the day that box was checked.

Assuming we take the advance directive as written, what conclusions can be drawn from a directive in which the ideas a patient expresses regarding future care seem at best inconsistent, or at worst, contradictory? Documentation that allows for such situations to occur demonstrates inadequate achievement of the ideal of “informed” consent. It is well recognized that patients leave routine advance directive discussions with serious misconceptions about life-sustaining treatments. Was Mr Miller adequately informed regarding the poor outcomes, potential requirements for mechanical support, and frequent complications of existing in a persistent vegetative state? We find it incredible that, in the context of a routine outpatient procedure (the conditions that resulted in the generation of his advance directive), any such discussion occurred, much less a meaningful dialogue with enough detail to inform such a decision.

Perhaps, of course, we were not obligated to honor Mr Miller's directive, even if it actually was generated after appropriate counseling. The American Medical Association's Code of Medical Ethics states that physicians do not have to offer treatments that “in their best professional judgment, will not have a reasonable chance of benefiting their patients.” Not being obligated to offer treatment and withholding life-sustaining treatment in opposition to a family's request are, however, two very different situations. Based on the wishes expressed in his advance directive, Mr Miller continued to receive full support, including dialysis, despite our deep misgivings.

There are many promises we must keep when caring for patients who are critically ill, not least of which is to provide the level of care most appropriate to their medical conditions and wishes. Mr Miller's family had laid claim to something they believed was owed to their loved one, something he had been offered by our hospital with the implication that we would deliver it. And we were bound by a promise we found much harder to keep.

• ⁎ Name altered to protect identity.