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05/31/2013

Defending Disability Discrimination

by Thaddeus Mason Pope J.D., Ph.D.

In May 2013, Oklahoma enacted the Nondiscrimination in Treatment Act (NITA).  This law provides: “A health care provider shall not deny to a patient a life-preserving health care service the provider provides to other patients, and the provision of which is directed by the patient or [surrogate] . . . on the basis of a view that treats extending the life of an elderly, disabled, or terminally ill individual as of lower value than extending the life of an individual who is younger, nondisabled, or not terminally ill.”

Like a similar statute enacted in Idaho in 2012, the Oklahoma NITA is directed at disability discrimination.  This is a noble and worthy public policy objective.  But the NITA goes too far, because it also prohibits clinicians from refusing desired life-sustaining treatment “on the basis of disagreement with how the patient or [surrogate] values the trade-off between extending the length of the patient’s life and the risk of disability.”

This blanket prohibition rests on a limited and inaccurate assumption that considerations of an individual’s disability could never have the possibility of being relevant to the appropriateness of medical treatment.  Settled principles of law and ethics have rejected such a proposition for decades.  Even disability rights advocates concede this much.  A patient’s disability is often pertinent, even apposite.  Yes, sometimes the disability is not germane to the desired treatment.  Blindness, for example, is hardly a contraindication for a kidney transplant.  But, other times, a patient’s disability may adversely impact that patient’s capacity to benefit from the desired medical intervention.

For example, take Arthur McElroy, a patient institutionalized at Nebraska’s state psychiatric hospital since 1992.  McElroy was diagnosed with a delusional disorder, persecutory type with a previous diagnosis of paranoid schizophrenia.  In 2004, McElroy applied for kidney transplantation services at the Nebraska Medical Center.  But the NMC Patient Selection Committee rejected his application.  The Committee determined that McElroy’s “adherence to immunosuppressive agents and cooperation with his medical team was highly doubtful in light of his history and his chronic psychotic illness.”  In other words, NMC denied McElroy’s application specifically because of his disability.  It was deliberate disability discrimination.

But NMC’s discrimination was justified, because McElroy’s disability was directly related to his capacity to benefit from the transplant.  Since the organ was sure to be rejected, nothing outweighed the significant risks and burdens of surgery.  Indeed, when McElroy later brought a federal lawsuit under the Americans with Disabilities Act, the court granted summary judgment to NMC.  The U.S. Court of Appeals for the Eighth Circuit affirmed.  And the decisions in McElroy’s case are consistent with a uniform pattern in U.S. Courts of denying disability discrimination claims concerning life-sustaining treatment.  For example, in one of the infamous Schiavo v. Schiavo cases, the Eleventh Circuit held that federal disability discrimination statutes were “never intended to apply to decisions involving the termination of life support or medical treatment.”  They were never intended to apply when the disability has a clear and decisive relevance to the treatment at hand.

That brings us back to the Oklahoma NITA.  The NITA prioritizes the surrogate’s “trade-off between extending the length of the patient’s life and the risk of disability.”  Indeed, clinicians should generally defer to surrogate tradeoffs.  But the NITA goes too far in categorically mandating clinician deference to surrogate tradeoffs.  Sometimes, the surrogate’s balancing too lopsided.  Sometimes, the surrogate’s decision is clearly not consistent with the patient’s preferences or best interests.  Surrogates frequently exceed the scope of their discretion and authority.

In these cases, clinicians not only may, but must, consider the patient’s disability in determining the appropriateness of treatment.  But the Oklahoma NITA forces clinicians to administer invasive and aggressive interventions that impose significant burdens for extremely low chances of success.  Moreover, some Oklahoma health policy experts are concerned that the new law will prevent clinicians from having honest and candid conversations with patients and surrogates to make the medical condition completely clear and the various options and the ramifications of each.   The NITA is well-intentioned.  But it will probably cause far more harm than it prevents.

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