Ethical and Legal Aspects Applicable to the Neurological Intensive Care Unit

Neurologists and neurosurgeons in the neurological intensive care unit (neuro-ICU) frequently must decide on the level of care to be provided for certain patients with severe and irreversible brain damage. When confronted with the ostensible meaninglessness of life for such patients, the suffering felt by their families, the risk of survival without neurological recovery, and the duty to fulfill the prior wishes of the patient, the physician might be in a position that recommends a level of treatment that predictably shortens the patient’s survival. Physicians faced with such literally life-and-death decisions must be knowledgeable about the medical, ethical, and legal bases for such decision making. Most patients for whom these decisions to terminate treatment are considered are permanently comatose or vegetative. The starting point for discussion is the assumption of individual self-determination, rather than societal or religious judgment. Much of the current ethical and legal debate arises because such patients lack decision-making capacity (are incompetent) to decide about their own care. Consequently, others (families, proxies, physicians) must, in essence, decide for them. This chapter reviews the ethical and legal aspects of end-of-life decision making, particularly for incompetent, severely brain-damaged patients, and provides some guidelines for physicians responsible for their care. This chapter is intended only to be an overview, because laws regarding informed decision making and medical malpractice might vary; therefore, it is at times important to consult with experts in a particular state or jurisdiction regarding specific issues. It might be pointed out that medical ethics does not always equate with ethical behavior on the part of the individual physician, the latter having more to do with settling in one’s own mind the personal role one plays in guidance of patients and families in difficult situations. Some of these dilemmas are referred to further on.

All decision making regarding the extent of treatment begins with a clear definition of the patient’s diagnosis and prognosis. Restated, the issue is to determine how prognostic information should be factored into ethical clinical decision making regarding the level of care to be provided to patients who have had severe neurological damage. In the most common situation, the neurologist is asked to state the likelihood that the patient’s brain functioning will recover more or less to normal. Examples of such determinations include coma and vegetative states after cardiac arrest, head trauma, and stroke. Before any decision regarding withdrawal of life-prolonging treatment, the physician should strive to reach a prognosis with the highest possible level of certainty. (See Chapters 9 and 17 for discussions of prognostication and its limitations.) When using prognostic indicators, there is always a degree of uncertainty that should be considered before making decisions, but the precise level of certainty required for ethically sound decision making remains uncertain. Of course, the most grievous error is an incorrect prediction of poor outcome in which patients may die from withdrawal of care when they might have survived with a
good outcome. They may also suffer, however, if there is an inappropriate prediction of good outcome that leads to survival in a persistent vegetative or completely dependent state, which may not have been their wish. It is inappropriate for the physician to initiate steps to limit treatment if the prognosis remains altogether uncertain. Instead, the clinician should provide support and postpone decision making until the prognosis for return of consciousness becomes more certain. Although physicians are expected to supply information about prognosis to their patients, the Supreme Court of California in Arato v. Avedon held that physicians do not legally have to provide specific survival or mortality percentages to their patients, recognizing the leeway needed in giving individual recommendations (1). Ethical clinical decisions are based on both medical facts and individual values where the physician has expertise only about the former and the patient or patient’s surrogate has expertise only about the latter, and the decisions emerge from this joint expertise rather than from unilateral physician recommendations (2).

WITHDRAWAL OF LIFE SUPPORT: THE COMPETENT PATIENT

Four principal bioethical concepts form the foundation for decisions to terminate treatment: respect for autonomy, nonmaleficence, beneficence, and justice (3).

U.S. Supreme Court Justice Benjamin Cardozo described respect for autonomy in the medical context when he wrote, “Every human being of adult years and sound mind has a right to determine what shall be done with his own body” (4). The practice of informed consent is based on this concept of respect for autonomy (5). Physicians consider the duties of nonmaleficence and beneficence whenever they balance the burdens and benefits of a particular therapy. Justice embodies rules for the societal distribution of resources. Under the ethical principle of autonomy, patients have the right to refuse life-prolonging treatment, including artificial nutrition and hydration (6).

Competent, terminally ill patients sometimes ask their physicians to discontinue their life support systems to permit them to die. A relatively common scenario of this type in a neuro-ICU is that of a patient with amyotrophic lateral sclerosis who is dependent on a ventilator. Faced with a relatively short life expectancy and dependence on mechanical ventilation, some patients opt to be withdrawn from the ventilator even though this action results in almost certain death. From a purely ethical perspective in Western society, the physician’s role in such decision making is relatively easy. The rational wishes of competent patients are followed. Choosing a rapid death from respiratory failure over a protracted death from the other complications of motor neuron disease is generally considered to be a rational decision. It is emotionally difficult for the physician to witness and participate in such a death, but when the patient is competent and is completely informed of the alternatives, his or her wishes should be followed (7). The legal requirement for physicians to extubate such patients is grounded in the doctrine of informed consent, as ruled in Satz v. Perlmutter (8). The Florida court in Satz v. Perlmutter affirmed the right of a competent individual (Mr. Satz, a man totally paralyzed as a result of amyotrophic lateral sclerosis), to have life-support measures discontinued if the family agrees and there are no dependents.

Physicians have several well-defined duties in the care of dying patients who refuse respiratory support. First, the patient must be carefully and compassionately counseled about his or her prognosis, with and without treatment. The appropriateness and efficacy of various types of ventilatory support should be discussed in detail (7,9). A series of discussions, specifically more than one, should be held to ascertain that the patient’s wish to forgo ventilatory support is not an impulsive reaction to his or her illness, but rather is a carefully considered and consistently held choice based on a full knowledge of the consequences and treatment alternatives. The ambiguity here, in our view, is in regard to the issue
of reactive depression. Some view any desire to die as a reflection of an unnatural depression. Input from the patient’s family is valuable in determining the constancy and rationality of the patient’s decision. Another perspective, based on conservative religious doctrine, is that only God has the power to terminate life. Over the past few decades even the latter view has been modified by mainstream pronouncements that allow, but do not necessarily endorse, the withdrawal of care in certain circumstances. If the physician has a moral objection to carrying out the patient’s decision, he or she should transfer the care of the patient to another physician.

From a practical perspective, physicians should assure the patient and family that they would attempt to maintain comfort throughout the extubation and death. Morphine (or other narcotics or benzodiazepines) may be prescribed in doses (from 2 to 10 mg per hour of morphine as boluses or continuous infusion) that minimize suffering and lessen the pain and anxiety of air hunger in the recently extubated patient, even if this contributes, as a secondary effect, to respiratory depression, coma, or death (6,s10, 11, 12 and 13). The ethical principle of double effect supports the use of pain medication in doses that may risk respiratory depression because the primary intention is pain relief, although the foreseen but unintended result may be a hastening of death (12).

WITHDRAWAL OF LIFE SUPPORT: THE INCOMPETENT PATIENT

Ethical Aspects

The more frequent context for decisions to terminate treatment arise with the incompetent patient. Physicians can continue to respect patients’ autonomy by attempting to identify and follow their previously stated wishes. Advance directives are formal or informal instructions, executed by competent individuals that pertain to their medical care in the event they become incompetent. Physicians who follow patients’ advance directives permit their patients to consent to or refuse their treatment, despite their present incompetence. Informal advance directives refer to verbal statements made by patients to family members or friends that reveal their attitudes about maintaining life support in the setting of hopeless illness. Formal advance directives are of two types: (a) written instructional directives in the form of the legally nonbinding living will or in those states with statutory provisions, in the form of a legally binding terminal care document or natural death act; and (2) proxy appointments that designate a person to make surrogate decisions, which in those states with statutory provisions, can be made in the form of a legally binding Durable Power of Attorney for Health Care (DPAHC). The instructional directives have the advantage of providing a statement of the patient’s exact wishes, whereas the proxy appointments have the advantage of providing greater flexibility to adapt the patient’s wishes to each particular clinical situation (14).

Written advance directives do have inherent limitations. The patient’s medical situation can change significantly from the time of execution of an advance directive to the moment of treatment choices so that circumstances that may have been anticipated are not the circumstances present during the patient’s incompetence. Directives of the living will type often state that the patient refuses “life-prolonging” therapy and other “extraordinary measures” if he or she is in a hopeless “terminal condition.” The ambiguity arises in the interpretation of these vague phrases. Does the persistent vegetative state count as a terminal condition, given that patients have been recorded to survive for many years in such states? Furthermore, does continued artificial hydration and nutrition by gastrostomy tube count as life-prolonging therapy or an extraordinary measure? Patients and physicians may differ on their interpretation of these terms, and physicians may be thrust into the difficult position of being asked to make life-and-death decisions based on ambiguous directives. The DPAHC provision enacted by many states in the United States provides flexibility to overcome many of these ambiguities.
The agent named as DPAHC should know the values and preferences of the individual he or she represents. The DPAHC can then interpret these wishes and make judgments in specific clinical contexts. Patients can protect themselves to the greatest extent by executing both a terminal care document and a DPAHC.

In those more frequent situations in which advance directives do not exist, it is still of great value to have a proxy decision maker appointed. This may be done formally, as in states with Health Care Proxy laws, or informally by the physician appointing either one close relative or all the close family members and even all interested parties (e.g., the patient’s fiancé or closest friend) to participate in the decision making. Using the values of the patient, the proxy should be guided to attempt to reproduce the decision that the patient would have made in the particular situation. This type of decision making is called the standard of substituted judgment. Proxies must be told that their prediction of the patient’s preference may not be the same as the decision that the surrogate would choose for himself or herself. The realistic limit of the ideal of substituted judgment was shown in a survey of spouses who were asked to predict elderly patients’ preferences for cardiopulmonary resuscitation (CPR) (15). In more than one third of instances, spouses predicted that the patients would desire CPR when they would not. Interestingly, physicians erred frequently in predicting that elderly patients would not want CPR when, in fact, they did. Although imperfect, substituted judgment is the decision-making standard that best permits respect for a patient’s autonomy. In our view, the physician has an appropriate role in judging whether the proxy understands the mandate to make a substituted judgment.

In some situations, the proxy decision maker is thrust into the difficult position of not knowing which choice the patient would have made. In this circumstance, he or she should be asked to assess the relative benefits and burdens to the patient with or without treatment. This type of decision making is called the standard of best interest. The best interest standard is ethically less powerful than the substituted judgment standard because it requires the decision maker to use his or her own values to balance the benefits and burdens of treatment. The proxy’s values, hence his or her judgment, may or may not correspond to the decision that the patient would have made.

It is not uncommon, in our experience, for the proxy to solicit the advice of the physician on the correct course of action, beyond asking for prognostic information. We have taken the point of view that the physician should develop the personal discipline to avoid directly interposing personal belief systems, even to the extent of using expressions such as “if it were me or my family member.” This requires that guidance, rather than even subtle paternalism, be used as a method of support. More helpful in giving guidance are: (a) reassurance that the proxy is making the correct decision if his or her instinct is that the patient’s wishes would lie in one direction or the other; and (b) the physician’s experience with various prior cases. Even the reassurance that most patients who are severely injured will die in some short or intermediate period of time of medical complications, if not offered disingenuously, can be very helpful to families in realizing that some uncertainty must be a part of the process but can be put in perspective. Some families hang on a comment, often appropriate on the part of the physician, that there is no absolute certainty regarding a poor outcome; comments such as these should be couched in broad terms that indicate the chances are very small indeed. And, again in our view, the physician should not be the agent of efficiency or the subtly expressed desire of a hospital or insurance company to free up space or limit resources. One solution to this problem is to attempt to move the patient to a less intensive care environment, if possible, while decisions are being made.

In the severely brain-damaged patient for whom it can be determined with a high level of certainty that recovery of consciousness will not occur, continued treatment only prolongs
his or her dying and confers no benefit to the patient. It is morally permissible to withdraw treatment provided that the prognosis for recovery of consciousness is hopeless and that there is evidence that, while competent, the patient wished to be permitted to die in this situation. In the absence of any such evidence, it is morally permissible for the physician to withdraw therapies if the prognosis for recovery of consciousness is hopeless and the proxy chooses no treatment. In the absence of proxy involvement, it is morally acceptable to discontinue care if the physician and family agree that the burdens of continued treatment outweigh the benefits (5,16, 17, 18, 19 and 20). Treatment without benefit to the patient is considered futile.

Although the medical community may have reached consensus that there is no moral obligation to continue treatment deemed futile (21), there is still no legal consensus on the issue (22). In general, it is very telling that when there is a prospective disagreement about whether or not a treatment is futile, the courts have ruled in favor of the party wishing to initiate or continue treatment (1,23,24). In our own experience, even with a living will stating the patient’s wish not to have his or her life artificially prolonged, the court has ruled in favor of the one dissenting family member wishing to prolong aggressive treatment. It should be kept in mind also that some parts of society, particularly some non-Western societies, hold the belief that regardless of how dismal the prognosis, even if the patient is vegetative, the person should be kept alive at all costs. In terms of risk management, physicians should be aware of any policies addressing futile situations and continuing care that are in place at the hospitals where they practice. Following hospital policies demonstrates that the physician met the professional standard of behavior.

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