Today ( Feb. 21, 2012) in the Maryland legislature, the House Health and Government Operations Committee held a hearing on HB 449, a bill to grant health care surrogates the power to donate “non-vital” organs (a kidney or lobe of a liver) of a person diagnosed to be in a persistent vegetative state (PVS).

I know of four organizations that provided testimony, none of which is available online, though I have copies.

The Maryland Disability Law Center, the MD protection and advocacy agency, registered concern about the potential for misuse.

The bill allows surrogates, including a “friend,” to make decisions to donate a part of another person’s body based on that person’s religious, moral or personal values.  That is too vague and subject to misuse. There are significant risks to donating a kidney or lobe of a liver.   It is not generally within the role of a surrogate to make health care decisions that cannot benefit the person on whose behalf they are acting. Proceeding with an advance directive, wherein the individual has clearly expressed preferences, seems the clearer path.

Marie Hilliard, JCL, PhD, RN, Director of Bioethics and Public Policy, submitted testimony on behalf of the National Catholic Bioethics Center.  She cites evidence from the American Hospice Association that people in PVS have “a predisposition to develop recurrent urinary tract infections” which can become more generalized.  Specifically arguing against presumed consent by the person diagnosed in PVS, she says, “House Bill 449 violates the right to informed consent of the most vulnerable of persons, subjecting them to a procedure that could be lethal to them.”  She then addresses a proposed amendment to the bill which would limit the organ donation authority to people diagnosed in PVS from whom life support is to be withdrawn.

Most egregiously, there have been some reports of consideration of declaring the PVS patient terminally ill, withdrawing life-sustaining care, and placing them on a donor list. This is to be done with the consent of a surrogate, who may be exhausted and financially challenged because of the condition of the PVS patient, but hoping to secure some perceived “good” by donating the PVS patients organs as they are caused to die. Existing standards for organ donation require, even for those who are terminally ill, that the decision to withdraw life-support must be made in the best interest of the patient before any decision is made concerning organ donation.

Stephen Mikochik, Temple University law professor and Chair of the National Catholic Partnership on Disability (NCPD), also filed testimony on behalf of NCPD. 

. . . [B]y requiring physicians to extract body parts solely for the benefit of others, without clear evidence of the patient’s consent, H.B. 449 forces physicians to violate their ethical duty . . . to hold “the best interests of the patient as paramount.” (AMA Code of Medical Ethics, Op. 10.015 (Dec. 2001).)

. . . [B]y targeting PVS patients as candidates for invasive surgery and organ removal solely to benefit others, H.B. 449 singles out a class of persons, disabled under civil rights law, for adverse treatment. This could constitute illegal discrimination.

Finally, if passed, only legislative fiat would stand in the way of expanding H.B. 449 to cover those with serious dementia or similar cognitive impairments on the grounds that, like those in PVS, such patients “would hardly feel the loss.”

Finally, NDY filed testimony.  In addition to NDY versions of the points made by others, I decided to include two points to “officially” express our continuing outrage that this or any other health care decisions laws are built on the “quicksand” of a “PVS” diagnosis:

1.    The persistent vegetative state or PVS diagnosis has been proven to be unreliable, and medical research has increasingly brought it into question.

From studies reported in such esteemed publications as the British Medical Journal to expert interviews reported in the New York Times Magazine, the consensus has emerged that PVS is about 40% misdiagnosed.  [Andrews, Murphy, Munday and Littlewood, Misdiagnosis of the vegetative state: retrospective study in a rehabilitation unit, British Medical Journal 1996;313:13-16 (6 July); Schnakers, Vanhaudenhuyse, Giacino, et al., Diagnostic accuracy of the vegetative and minimally conscious state: Clinical consensus versus standardized neurobehavioral assessment, BMC Neurol. 2009; 9: 35 (2009 July 21); A Drug That Wakes the Near Dead, NYTimes Magazine, Jeneen Interlandi, Dec 1, 2011.]

If a PVS diagnosis once appeared to provide a reasonably reliable basis for differentiating statutory rights, this is clearly no longer the case.  A forty percent misdiagnosis rate is only a little better than the flip of a coin.  A PVS diagnosis should not make a person eligible for having their organs donated by a surrogate any more readily than other persons who are deemed incapacitated or unable to make and communicate their own health care decisions.

2.    The PVS diagnosis (which amounts to a prognosis that the person will not wake up or become responsive) has been given prematurely to individuals who experience a brain injury, without adequate regard for the appropriate “waiting period” based on neurological literature.

According to the Multisociety Task Force on PVS, “Recovery of consciousness from a posttraumatic persistent vegetative state is unlikely after 12 months in adults and children. Recovery from a nontraumatic persistent vegetative state after three months is exceedingly rare in both adults and children.” Medical Aspects of the Persistent Vegetative State, The Multi-Society Task Force on PVS, N Engl J Med 1994; 330:1499-1508, May 26, 1994.

Increasingly, however, families are counseled to withdraw life support before such a waiting period has passed.  As discussed by experts in the New York Times Magazine article cited above:

“Once a patient progresses to minimal consciousness, we can’t predict what’s going to happen,” says Dr. Joseph J. Fins, chief of medical ethics at Weill Cornell Medical College and author of a coming book, “Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness.”. . . .

“Early on, when families have the option to pull the plug, it’s almost impossible to tell what the long-term prognosis will be,” says Dr. Soojin Park, a neurointensivist at the University of Pennsylvania Hospital,. . . . “And then later, when we have the certainty — that this is as good as it’s going to get — that option is gone. Because by then, the patient is breathing on their own. There’s no more plug to pull.” At that point, families who want to end a loved one’s suffering must either have the feeding tube removed, or agree to let the next bacterial infection win out, unhindered by antibiotics. Many families find choosing these deaths much more difficult than turning off a ventilator. …

It is not uncommon for doctors to assume the worst and advise family members to withdraw care early. They do so in part because they see their duty as helping loved ones face reality. But Fins argues that this is a cop-out. “It’s glossing over all the unknowns for the sake of a quicker, cleaner solution,” he says. “It’s wrong to be so uniformly fatalistic so early on, especially with all the data emerging about the prospects for later-stage recovery.”

Such “rush to judgment” concerning the permanence of a PVS diagnosis is nothing short of a death sentence.  Again, a PVS diagnosis should not make a person eligible for having their organs donated any more readily than other persons who are deemed incapacitated or unable to make and communicate their own health care decisions.  It is not acceptable to construct a statute on the quicksand of a PVS label. 

I have one report from the hearing so far, indicating that the only witness in favor of the bill was a family member of someone diagnosed in PVS.  One advocate emailed me that this bill appears to have arisen in response to a tragic situation.  As is so often true, an individual case can sometimes lead to bad law, but hopefully not this time. – Diane Coleman