Ethical and End-of-Life Issues in Neurology



Ethical and End-of-Life Issues in Neurology


Fred Rincon

Lewis P. Rowland

Stephan A. Mayer



INFORMED CONSENT

The concept of informed consent originates from the notion that individuals are autonomous. Rational individuals with decisional capacity, or competency in legal terms, are uniquely qualified to decide what is best for them. It also means that people should be allowed to do what they want, even if doing so involves considerable risk or would be considered foolish by others. This of course is supported only if the individual’s decision does not infringe on the autonomy or welfare of another individual (Table 153.1).

When a patient is found not to have decision-making capacity, the health care provider must seek an alternate way to obtain consent. The options in these cases are as follows: (1) to seek a written advance directive such as a living will or durable power of attorney (for health care) or (2) in the absence of an advance directive, the physician must seek the substituted judgment of a proxy or surrogate authorized by the jurisdictional law.


ADVANCE DIRECTIVES

Advance directives are legal documents that can be used to direct care in the event of incapacity and are most often helpful in situations related to terminal conditions. These documents are able to specify the individual’s preferences in regard to end-of-life treatments under specific circumstances and may also appoint surrogate decision makers if the individual is not competent to make decisions at some future time. Shortcomings of these documents are as follows: (1) that the health care provider may not find instructions that clearly guide certain treatment decisions and (2) the ethical argument that a person may not be able to predict his own reaction if faced with a disability. Studies have demonstrated a tendency among the nondisabled to view disability as equivalent to death and historically, investigators frequently equate death with the severe disability. In this sense, advance directives or living wills, even if legally valid, are suboptimal to find treatment directions in certain terminal illness particularly when goals of self-determination and perceptions that guide one’s chosen moral course may change.








TABLE 153.1 The Informed Consent Process





















Components


Example


Verifying that the patient has decision-making capacity


This component verifies that the patient has insight into the proposed procedure or research. A bedside evaluation assessing if the patient can (1) understand the information; (2) understand the current situation and its consequences; (3) rationally consider information in light of one individual’s values; and (4) retain the information given, analyze it, and make an informed decision.


Full disclosure


This component is designed to explain the risks and benefits, ratio, complications, and alternatives of the procedure or research. Without disclosure, voluntary choice and competence cannot be properly exercised.


Understanding


In this component, the agent verifies that the patient understands fully the risks and benefits, specifically if the ratio (risk/benefit) is in favor or not.


Voluntary choice


In this component, the agent verifies that there is deliberate informed consent. The informed consent process should be guided by the freedom to act voluntarily without coercive forces or due influence.


Formal authorization


In some jurisdictions, a written document is necessary to fully execute the procedure or research for which the subject has been asked to consent. This should include a statement of risk/benefit and potential complications and alternatives and the signatures of the health care provider, patient or surrogate, and in some instances, a witness.





END-OF-LIFE CARE

Neurologic diseases have been at the center of discussions on issues at the end of life. To this end, end-of-life conversations are routine between health care providers and patients suffering certain neurologic diseases. The American Academy of Neurology (AAN) has set standards for the determination of death based on neurologic criteria, prediction of outcome in comatose survivors of cardiac arrest, and for the persistent vegetative state (PVS). Additional diseases such as amyotrophic lateral sclerosis (ALS) and Alzheimer disease have been the focus of debates about physician-assisted suicide. Health care providers practicing in neuro-intensive care units (ICUs) also face end-of-life discussions when withholding or withdrawing life-sustaining therapies. Finally, presymptomatic diagnosis is available for incurable conditions like Huntington disease, creating additional ethical challenge.


INEFFECTIVE, INAPPROPRIATE, AND FUTILE THERAPIES

Health care providers may often encounter clinical situations in which therapies may found to be ineffective at achieving certain goals. Health care providers don’t know whether a therapy, in a particular neurologic condition, will be effective unless the therapy is trialed. In this case, it is always better to attempt a “trial of intervention” by setting up reasonable goals of care, determining whether those goals can be achieved by ongoing reassessment, and allowing the health care provider to find if the therapy is ineffective while maintaining good communication with patient’s families, friends, and surrogates. This approach would allow the health care team to withdraw an ineffective therapy rather than withhold a potentially beneficial treatment, limiting the chance for undertreatment and avoiding ethical dilemmas. Some treatments may be considered inappropriate or inadvisable. Such treatments are characterized by extremely low likelihood of achieving the intended goal, minimally or potentially beneficial but extremely expensive, and of uncertain or controversial benefit. Finally, some other treatments may be labeled as futile. There is still controversy about the medical definition of futility, but in general, futile medical interventions serve no meaningful purpose no matter how often they are repeated. Therefore, a futile medical intervention is that for which there is de facto knowledge that it will not accomplish its intended goal. Characteristics of a futile therapy are that the intervention has no pathophysiologic rationale, that the intervention has already failed in the patient, and that the unintended effect occurs despite maximal treatment. Futile, inappropriate, or inadvisable cases are fortunately rare but very complicated from the ethical perspective, as they bring the values of the patient, surrogates, health care providers, and the society at odds. For this reason, resolution of these conflicts requires conscientious ethical analysis and a fair process that usually involves a multidisciplinary team, and a bilateral or shared conflict resolution.


WITHHOLDING AND WITHDRAWING

When facing withholding or withdrawal of medical interventions, ethical questions can not be addressed successfully unless the probability of outcomes is entertained. To attain a balanced view of the impact of therapeutic decisions and the expected disability to the patient, the effort requires understanding of disease in question and a multidisciplinary team approach. Morally, there may be no difference between withholding and withdrawing life-sustaining therapies. However, patients, families, and health care providers have strong and divergent views. Some may feel comfortable with both situations, some may feel comfortable only when deciding not to start a therapy, but some may feel uncomfortable deciding when to stop that therapy. According to Miller and Truog, “what distinguishes withdrawing from withholding, is that in the former, the agent initiates the fatal consequence, as distinct from merely permitting it to continue without intervention to stop it.” The distinction between withdrawing and withholding may cause feelings of reluctance but is morally irrelevant and can be dangerous. From the legal standpoint, the courts in the United States have upheld the concept that there is no difference between withdrawing and withholding. Both are medical decisions that entail a duty to inform the patient and his or her representative.

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Jul 27, 2016 | Posted by in NEUROLOGY | Comments Off on Ethical and End-of-Life Issues in Neurology

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