AAN Position Concerning Life-Sustaining Treatment
Position Statement on Laws and Regulations Concerning Life-Sustaining Treatment, Including Artificial Nutrition and Hydration, For Patients Lacking Decision-Making Capacity
Bacon et al. Neurology® (2007; 68: 1097-1100).
Bacon et al. Neurology® (2007; 68: 1097-1100).
Read the complete position statement.
Excerpt from the statement:
The American Academy of Neurology (AAN) ... has long taken an active interest in scientific, ethical and professional discussions regarding the provision and withdrawal of life-sustaining medical treatment for patients who lack decision-making capacity. Part of this interest stems from the role neurologists play in evaluating the cognitive capacity of patients for whom decisions to initiate, maintain or discontinue life-sustaining interventions may be necessary. Neurologists share the concern of all physicians that decisions regarding the treatment of patients should be anchored in terms of each patient's own values, preferences and goals of care, as best understood, which determine what is best for each patient. Respect for a patient's autonomy and wishes—whether those wishes are to continue or discontinue therapies—is essential.
Relevant contemporary political and legal issues
In the past two years in the United States, state and federal courts, legislators and other elected officials have been involved in a national debate regarding the proper venues, standards of evidence, and presumptions to be employed when determining the wishes, values and best interests of patients who are incapable of expressing their own views regarding their own medical care.
This debate particularly centers on decisions to continue or withdraw artificial nutrition and hydration (ANH) when a patient is in a persistent vegetative state (PVS). This was exemplified most recently by the case of Theresa Schiavo, who had a cardiac arrest in 1990, was initially comatose, and then was in a persistent vegetative state. Her case was the subject of over ten years of activity involving all branches of state and federal government, largely intended to overturn the initial rulings of a Florida judge who concluded by a clear and convincing standard of evidence that Mrs. Schiavo's wishes for care (which were determined through evaluation of her prior verbal statements) would have been to discontinue her ANH and that her husband, Michael Schiavo, was the appropriate decision maker for her. Once all legal and political maneuvers were exhausted, Mrs. Schiavo's feeding tube was removed in March 2005; she died 13 days later.
Soon after her death, and again in 2006, legislators in several states introduced bills that would create the presumption that any person who has been declared legally incompetent to make decisions affecting medical treatment or care would, in the absence of a carefully written advance directive that met specific statutory requirements, choose to receive ANH to sustain life. To withdraw ANH in these situations, the patient's surrogate would have to prove by a clear and convincing standard that the patient would have chosen to have ANH withdrawn in the current circumstances. Furthermore, this proposed legislation would establish that elected officials, who in existing law have no legal standing as an "interested party" in such cases, would have the same right to challenge the administration or withdrawal of ANH as any true "interested party" (i.e. spouses, relatives) would. As of mid-February 2006, 20 bills, based upon model legislation from the National Right to Life Committee (NRLC), had been introduced in 13 states. Another 14 bills were modified to add additional restrictions.
The presumptive nature of the model legislation regarding ANH would overturn more than 30 years of legal and ethical precedent because it would preclude patients' fundamental right to make their own lawful medical decisions by proxy. Some bills (for example, S.B. 1280 from the 2006 California legislative session and H.F. 3255 from the 2006 Minnesota legislative session) would have compounded this problem by requiring proof that the patient gave "express and informed consent" in the course of declaring their wishes or goals of care in the absence of written documentation, such as an advance directive. The definition of express and informed consent used in these bills would create an impossibly high threshold for surrogates or family to meet in demonstrating the patient's intent on the basis of verbal communication. For example, the definition in the proposed Minnesota legislation would have required:
[C]onsent voluntarily given with sufficient knowledge of the subject matter involved, including a general understanding of the procedure, the medically acceptable alternative procedures or treatments, and the substantial risks and hazards inherent if the proposed treatment or procedures are carried out and if they are not carried out, to enable the person giving consent to make an understanding and enlightened decision without any element of force, fraud, deceit, duress, or other form of constraint or coercion.
Thus, under the terms of the proposed legislation, unless patients had previously described the exact circumstances leading to their need for a surrogate decision maker, and unless at the time of their previous statement they demonstrated a clear understanding of the consequences of their wishes, even a strong verbal statement by the patient in opposition to ANH that had been witnessed by multiple persons, or stated on multiple occasions, could be disregarded.
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