Despite these cautions, this breakthrough in neuroimaging
may lead to future opportunities to ask patients with disorders of
consciousness about their preferences. Until then, it will certainly help identify
conscious individuals misdiagnosed as vegetative who are in fact able to follow
commands or to communicate with varying degrees of accuracy. These devastating
medical errors must be avoided. But despite neuroimaging’s investigative promise,
like most technologies, we also need to determine when it need not be used. Not
all patients will need a scanner for clinical assessment. And when these
technologies are employed, their use should be guided by the patient’s history,
the nature of the injury, the clinical exam, and knowledge of the underlying
neurobiology of the patient’s condition. Only an integrated approach can
meaningfully add to patient assessment and avoid technologically driven
category errors.
Whatever its promise, neuroimaging should never become a
routine arbiter of whether life-sustaining therapy should be withdrawn. It is
our strongly held view that if a patient articulated a preference or completed
an advance directive before losing decision-making capacity, the prior wishes should
guide care. We may be tempted to use the scanner to adjudicate family disputes
like those in the Schiavo or Wendland cases, but the likelihood is that the
answers we seek will be vague, misleading, or simply unobtainable, despite all
the technology. These ambiguous outcomes should not have the potential to
undermine authentic premorbid choices.
If this technology someday matures as a means to fully
assess decision-making capacity, it would remove the choice from a surrogate
and restore it to the patient. That requires a huge technical leap, however. In
the meantime, it would be tragic and ironic if a technology that gives voice to
some patients thought to lack one inadvertently undermined the autonomous
wishes of others.
Imagine rushing to the hospital because your loved one has
had a serious brain injury or cardiac arrest. The doctors tell you that the
patient is unconscious and will not recover. Still reeling from the sudden
news, you are asked about any end-of-life care preferences and whether you will
agree to a do-not-resuscitate order.
You and your loved one had some conversations about death
and dying and signed advance directives after the Schiavo affair, but in retrospect,
it all seems incredibly superficial and provides little guidance. It is such a
lonely moment—asked such things by doctors you don’t know or trust. The one
person who could guide you is lying in the bed before you on a breathing
machine. If only you could ask . . . Now imagine rolling your loved one down to
the hospital’s MRI machine and asking him if he wants to live or die by reading
his responses on the scanner.
This is still the stuff of science fiction, but researchers
from the Universities of Cambridge and Liege just reported in the New
England Journal of Medicine how functional magnetic resonance imaging, or
fMRI, might someday be used as a communication tool for patients with
disordered conscious, in the vegetative and minimally conscious states. They
studied fMRI brain activations seen when patients were asked to imagine tasks
like hitting a tennis ball or seeing the rooms in their home. Patients were
asked to use one of these responses for yes and the other for no. The images
demonstrated an especially profound discordance between what was seen on
clinical exam and what was indicated by neuroimaging for one patient,
previously deemed vegetative, who could communicate.
This technology does more than open up the possibility of
communicating with people thought to be unconscious and unreachable. It also
suggests that neuroimaging must eventually be integrated into the clinical
assessment of many patients who are vegetative or minimally conscious. This is
a dramatic finding and a potential game-changer for clinical practice.
But it is not so simple. Only five of fifty-four patients
studied demonstrated the ability to follow researchers’ commands, and all of
these had traumatic brain injury. And, paradoxically, some patients with higher
levels of cognitive function—similar to the locked-in patient Jean Claude
Bauby, who authored The Diving Bell and the Butterfly by blinking his
left eye—might not be able to communicate using this fMRI paradigm. Scientifically,
it is important that we further understand the variance in measured responses.
Only then will this technology become a reliable resource to assess the
presence or absence of consciousness and one’s ability to communicate.
But, for the few patients for whom it might work, can a
signal on an MRI scan help guide decisions about end-of-life care? Might these
responses reach the clinical standard of decision-making capacity or legal competence?
Can patients show enough understanding for the rest of us to appreciate that
their choices reflect authentic patient self-determination? Certainly, this is
not yet the case, nor will it be anytime soon. As a proxy for “discussion” with
the patient, this mind-brain interface may be inferential and misconstrued.
After all, even when we are simply talking with each other, miscommunication
can occur.
The pitfalls of reading too much into this technology become
apparent if we recall the 2001 Wendland case from California. Robert Wendland
recovered to a minimally conscious state several months after a motor vehicle
accident. His wife, Rose, consented to routine medical care, including the
replacement of several dislodged feeding tubes, until physicians sought her
authorization for a fourth insertion. She refused after consultation with her
children and Robert’s brother, all of whom felt that Mr. Wendland would not
have wanted the intervention. Mr. Wendland’s doctors agreed, as did all members
of the hospital’s twenty-member ethics committee. Mr. Wendland’s parents, however,
objected and sought a restraining order. In response, Rose Wendland petitioned
the court to be named Robert’s conservator—a request the court granted.
Eventually, the case ended up in the California Supreme Court, which heard
arguments despite Mr. Wendland’s death from pneumonia, citing the ongoing legal
relevance of the question.
The Supreme Court held that Rose Wendland did not present
the necessary clear and convincing evidence of her husband’s prior wishes. Two
conversations in which Mr. Wendland had “allegedly expressed a desire not to
live like a ‘vegetable’” were deemed not to meet the clear and convincing evidence
standard because one took place when Mr. Wendland “was recovering from a
night’s bout of drinking.” The other occurred after Mr. Wendland lost his
father-in-law, with whom he had been close. The Supreme Court agreed with the
judgment of the trial court, which wrote that:
neither of these conversations reflect an exact “on
all-fours” description of conservatee’s present medical condition. More
explicit direction than just “I don’t want to live like a vegetable” is
required to justify a surrogate decision-maker terminating the
life . . . of someone who is not in a PVS [persistent vegetative
state].
But most critical to the
relevance of a potential interrogation by neuroimaging is what the Supreme
Court made of a 1997 videotaped interview assessing Mr. Wendland’s preferences.
Using a rather low-tech yes/no board, Mr. Wendland’s physician asked the
following questions:
Q: Do you have pain?
A: Yes.
Q: Do your legs hurt?
A: No.
Q: Do your buttocks hurt?
A: No.
Q: Do you want us to leave you alone?
A: Yes.
Q: Do you want more therapy?
A: No.
Q: Do you want to get into the chair?
A: Yes.
Q: Do you want to get back in bed?
A: No.
Q: Do you want to die?
No answer.
Q: Are you angry?
A: Yes.
Q: At somebody?
A: No.
The court placed special emphasis on this exchange and the
notable lack of an answer to the question of whether Mr. Wendland wanted to
die. While acknowledging that “experts dispute the consistency and accuracy of
Robert’s responses to questions,” the court wrote that “it is difficult to
ignore the fact that he declined to answer the question, ‘Do you want to die?’
while giving facially plausible ‘yes’ or ‘no’ answers to a variety of other
questions about his wishes.”
Although the Supreme Court was careful to circumscribe the
applicability of its decision to the narrow class of patients represented by
Mr. Wendland—those who are conscious (albeit minimally so) and without formal advance
care planning—the emphasis it placed on the video is worrisome, especially in
light of the advent of technologically seductive neuroimaging, of which the New
England Journal of Medicine paper is a harbinger.
There is a risk in reading too much into these one-sided
interviews. Like the responses obtained from Mr. Wendland, those received from
the one patient who seemed able to communicate in the New England Journal of
Medicine study depended entirely upon what questions were asked. The
patient could neither initiate responses nor formulate questions. His responses
were binary in nature and indicated only yes or no.
Whether the yes/no box is a primitive one or a sophisticated
fMRI, the response seems unlikely to meet the “clear and convincing”
evidentiary standard. In the Wendland case, it seems to us that the court allowed
his lack of response to cast too much doubt. What did it really mean? Did he
understand the question? Was he fatigued? Did his attentiveness lapse? Given
all these possibilities, should we add his lack of response to the list of
uncertainties undermining his articulated prior wishes and the clear and convincing
standard? Conversely, relying excessively on a bright flare associated with yes
or no on an fMRI would imply too much certainty when there should be doubt.
Such deference would constitute a procedural error when seeking a patient’s
current wishes. Suppose the patient really wanted to say, “Maybe . . . who
wants to know?”
In both cases, the patient’s inability to initiate
questions, or to give nuanced responses, or to show understanding commensurate
with the gravity of the decision—in line with what James Drane eloquently described
as a sliding scale of competence—calls his decision-making capacity into question.
With these limitations, we would grade such responses at the level of assent or
dissent, at best, and assert that they cannot indicate informed consent or
refusal.
Despite these cautions, this breakthrough in neuroimaging
may lead to future opportunities to ask patients with disorders of
consciousness about their preferences. Until then, it will certainly help identify
conscious individuals misdiagnosed as vegetative who are in fact able to follow
commands or to communicate with varying degrees of accuracy. These devastating
medical errors must be avoided. But despite neuroimaging’s investigative promise,
like most technologies, we also need to determine when it need not be used. Not
all patients will need a scanner for clinical assessment. And when these
technologies are employed, their use should be guided by the patient’s history,
the nature of the injury, the clinical exam, and knowledge of the underlying
neurobiology of the patient’s condition. Only an integrated approach can
meaningfully add to patient assessment and avoid technologically driven
category errors.
Whatever its promise, neuroimaging should never become a
routine arbiter of whether life-sustaining therapy should be withdrawn. It is
our strongly held view that if a patient articulated a preference or completed
an advance directive before losing decision-making capacity, the prior wishes should
guide care. We may be tempted to use the scanner to adjudicate family disputes
like those in the Schiavo or Wendland cases, but the likelihood is that the
answers we seek will be vague, misleading, or simply unobtainable, despite all
the technology. These ambiguous outcomes should not have the potential to
undermine authentic premorbid choices.
If this technology someday matures as a means to fully
assess decision-making capacity, it would remove the choice from a surrogate
and restore it to the patient. That requires a huge technical leap, however. In
the meantime, it would be tragic and ironic if a technology that gives voice to
some patients thought to lack one inadvertently undermined the autonomous
wishes of others.