After the passage of the Patient Self-determination Act of 1991, advance directives were instituted to ensure patients’ control of their treatment in circumstances when their explicit consent may be difficult or impossible to attain. In recent years, however, advance directives (ADs) have come under criticism as ineffective or flawed. In a Journal of Palliative Medicine article entitled “Advance Directives/Care Planning: Clear, Simple, and Wrong,” R. Sean Morrison asserted that [T]he majority of high-quality research has failed to find a strong link between advance directives/care planning and outcomes of importance.”
Some problems with ADs are extrinsic: many patients don’t have them; even when they do, ADs are not always available in crisis situations, or they are overridden, and so on. But Daniele J. Lamas, M.D., has identified an intrinsic flaw. In a New York Times op-ed, she recounts a case of a patient’s wishes being disregarded. The patient had expressed her desire never to be intubated. Nevertheless, she was subjected to the procedure when brought to the hospital unconscious, with pneumonia; her AD was not available, and she was not able to protest. To her physician’s surprise, however, she expressed not anger but gratitude when awakened. Eventually, she was given a tracheotomy and recovered sufficiently to return home.
Humans have an amazing capacity to adapt to illness or disease. From the vantage point of youth or good health, it is easy for people to say that they would rather die than live with significant limitations, pain or dependence on others.
But people evolve in ways they cannot expect. This is why some survivors of catastrophic accidents, such as spinal cord injuries leading to complete paralysis, nevertheless come to rate their quality of life as good—even if they never would have imagined being able to do so before the accident. As a result, what people are willing to go through to extend their life might change depending on the context.
Lamas’ recommendation is not to abandon planning for dire contingencies but rather to encourage communicating with a health proxy—not to “make statements that are in any way binding, but to practice what it is like to say those words and experience the complicated feelings that arise when these topics are at hand.” But of course, this approach depends on the availability of a trusted health proxy, which is not always the case.
Lamas’ example may expose a deeper problem: ADs often disadvantage people with disabilities (PWDs). How so? ADs are designed primarily to allow patients to avoid undesired treatments near the end-of-life, but one person’s unwanted treatment perpetuating suffering may be another’s desired treatment extending life. Those who desire such treatments can say so in their ADs. But like all of biomedicine, the institution of ADs has an implicit bias in favor of health as it is understood by non-disabled people. Thus, when, as is often the case, ADs are not available, treating physicians are all too likely to assume that patients with significant disabilities do not wish to be treated or resuscitated—or even that they should not be.
In decades of working in the field of disability studies, I have heard numerous instances of DNR orders being placed in the charts of PWDs without their consent or knowledge. This practice reflects the common view that PWDs have lower quality of life (QOL) and are not worthy candidates for resuscitation and further treatment. People with significant impairments are especially vulnerable, then, in situations where they may be incapable of directing their treatment. The COVID pandemic has dramatized and exacerbated this problem. For example, in the UK, “People with learning disabilities have been given do not resuscitate orders during the second wave of the pandemic, in spite of widespread condemnation of the practice last year and an urgent investigation by the care watchdog.” Thus, the onus is on PWDs (and other marginalized individuals) to protect themselves preemptively with ADs, a provision that may be complicated or precluded by some disabilities.
Lamas’ point is obvious, upon reflection. Of course one changes as one grows older and perhaps infirm. Of course one’s tolerance of infirmity may change. So of course one’s preferences for treatment might change. And a static document cannot keep up with this evolution. But an implicit factor in her qualification “from the vantage of youth or good health” needs to be explicitly articulated: the typical scenario in which advance directives are composed is not only one of “good health” but also of non-disability. Here, to me, is the crux of the matter: an advance directive made by someone who is nondisabled is almost certain to register unconscious prejudice against disability. If so, such directives may function contrary to the best interests of patients who survive a medical crisis with a significant, unexpected impairment. As Lamas says, they may well come to accept a condition they thought would be intolerable. If they have time.
Those of us in Disability Studies are familiar with bias having to do with the key but ill-defined concept of QOL. In study after study, disabled people report their QOL nearly as highly as nondisabled people report theirs. This phenomenon is known as the disability paradox. Despite the surprisingly small gap between the subjective reports of QOL by non-disabled and disabled people, there is a significant gap between nondisabled people’s estimates of disabled people’s QOL and PWDs’ own reports of it. Furthermore, nondisabled health care professionals render even lower estimates of the QOL of disabled people than the general nondisabled population. This is a major obstacle to the delivery of adequate health care to disabled people. The imposition of unrequested DNR orders is one but expression of this bias.
There are, then, two distinct aspects of the disability perspective on ADs. On the one hand, the onus is on disabled people make their wishes known if they are to avoid having their lives cut off if they lack ADs, or if such documents are ignored or overridden. On the other, nondisabled people risk having their lives prematurely ended if their advance directives project on their future selves expectations of low QOL that their actual circumstances may belie. There is no obvious easy solution to this bind. The answer, if there is one, lies in public health and medical education that admits the possibility that life with a disability can be of high quality and is deserving of respect and preservation.
G. Thomas Couser, PhD is retired from Hofstra University and is currently faculty in the Narrative Medicine Program at Columbia University.