Autonomy

Patient autonomy is the foundational value in Western bioethics and law. It is broadly defined as the patient’s right to make decisions regarding his or her healthcare. However, for a patient’s decisions to be counted as autonomous and thereby respected, he or she must possess the appropriate capacity to reason and choose. When patients possess the necessary capacities, they are said to have DMC. In that case, their decisions must be respected even if others believe the decisions are not ideal or even contrary to the patient’s best interests.

Competency versus capacity

Although both competency and capacity refer to the patient’s capability to make autonomous decisions, each is determined differently and is used in different contexts.

• •

  Competency : a legal term that can only be determined by the court

• •

  Decision-making capacity: assessed by a clinician in the healthcare setting

General principles of decision-making capacity

• •

  DMC is domain specific. A patient can lack DMC in some areas (e.g., financial management) but not others (e.g., healthcare decisions).

• •

  Even within a domain, the DMC required will vary depending on the complexity of the decision to be made. Evaluate the way a patient’s abilities match up with the demands of the particular decision to be made.

• •

  Decision making is a process. Assess how a decision is made; not what is decided.

• •

  Evaluation of DMC should involve direct observation of the patient making the decision in question. Avoid inferring from the patient’s diagnosis or particular cognitive deficits.

Specific abilities required for decision-making capacity

There is a broad consensus in bioethics and the law regarding the abilities that constitute DMC. The most widely used model was first proposed by Paul Applebaum and Thomas Grisso ( Box 62.1 ).

• •

  The patient must be able to express a choice, whether verbally or behaviorally.

• •

  For healthcare decision making, the patient must be able to understand relevant information including:

  • •

    The nature and rationale of the treatment

  • •

    Its risks and benefits, including their likelihood

  • •

    The risks and benefits (and their likelihoods) of alternative treatments, including the option of no treatment

• •

  The patient should appreciate the relevance of this information for their own situation, an ability that is often impaired in patients with diminished insight after brain injury.

• •

  The patients must be able to reason with the relevant information in a logical and coherent manner. This would include the ability to recognize how the various options align with their values and to imagine the consequences of the various outcomes. The recommended strategy for assessing a patient’s ability to reason in the appropriate manner is to ask the patient to think out loud as they consider the decision at hand.

Additional considerations in the assessment of decision-making capacity

• •

  Address factors that might adversely affect a patient’s performance, such as distraction, fatigue, and the effects of sedating medications, before the assessment.

• •

  Conduct serial evaluations given the degree to which cognitive capacities can fluctuate after brain injury.

• •

  Obtain collateral information from others, such as family members, about how the patient makes and executes decisions in other contexts.

• •

  Use formal assessment of the patient’s specific cognitive deficits and strengths, such as provided by neuropsychological testing. Keep in mind that neuropsychological testing is not a substitute for the direct clinical assessment of DMC.

• •

  Although the method for assessing DMC described earlier is widely accepted, be aware of the limitations of the model when applied to patients with brain injuries.

When a patient lacks decision-making capacity

When it is determined that a patient lacks DMC for a specific decision(s), an alternate mechanism for decision-making must be identified. Clinicians should be guided by the law in their jurisdiction on how to proceed in these situations. In most jurisdictions, there is a hierarchy of alternatives ( Box 62.2 ).

• •

  Clinicians should first determine whether a guardian exists.

• •

  If not, then it should be determined whether there exists a properly designated healthcare power of attorney.

• •

  If one does not exist, then most (but not all) states have statutes that identify legally recognized surrogate decision makers. For example, in order of priority, a statute might designate a spouse, followed by adult children, parent(s), siblings, etc.

• •

  If none of these mechanisms identifies an individual who could serve as a surrogate decision maker, then a guardian might need to be appointed by the court.

It is important to keep in mind that there are constraints on the decisions that surrogate decision makers can make.

• •

  Some jurisdictions restrict the types of decisions that certain surrogates can make (for example, surrounding withdrawal of treatment).

• •

  Surrogates are expected to make decisions as they believe the patient would have made them. This is known as substituted judgment.

• •

  However, if the patient’s wishes are not known or cannot be inferred, the surrogate must then make decisions in the patient’s best interests.

• •

  It should be emphasized that the surrogate’s own desires cannot be the basis of the decision; rather, surrogates must rely on either substituted judgment or the patient’s best interests in making their decisions.

• •

  Patients can and should still be involved in decisions that affect their lives, even if they do not possess DMC. In these situations, the concepts of assent and dissent may be useful to clinicians.

Americans with Disabilities Act

The Americans with Disabilities Act (ADA) was passed and signed into law in 1990 by President George H.W. Bush and was built on the foundation of the Rehabilitation Act of 1973. It was amended in 2008 and reauthorized in 2010. For protection under the ADA, a disability is defined as an impairment that substantially limits one or more major life activities, a record of such an impairment, or being regarded as having such an impairment.

The ADA:

• •

  Protects the civil liberties of individuals with disabilities

• •

  Prohibits discrimination by all public entities

• •

  Specifies equal access to employment, public places, transportation, and telecommunications

Return to work and return to school

People with brain injuries have varying degrees of physical, cognitive, emotional, and/or psychosocial impairments that can make return to work and return to school particularly challenging.

The US Equal Employment Opportunity Commission (EEOC) enforces Title 1 of the ADA, which prohibits discrimination on the basis of disability in employment. Under this, employers are responsible for providing reasonable accommodations to employees with disabilities, unless a particular accommodation provides an undue hardship on the business or employer.

Reasonable accommodations may include:

• •

  Job restructuring

• •

  Modifying work schedules

• •

  Acquiring adaptive or assistive equipment or devices

• •

  Reassigning tasks

• •

  Modifying the workplace and office layout to improve accessibility

• •

  Providing support services

Vocational rehabilitation specialists can provide one-to-one individualized assistance with job search and placement services through tailored interventions and advocacy level services. In addition, they can identify supports needed to help the person succeed at work.

Under the Individuals with Disabilities Education Act (IDEA), school-age children with disabilities are entitled to educational assistance such as Individualized Education Programs (IEPs) and accommodations such as modification of classroom equipment, use of assistive technology devices, modification of testing procedures, and psychosocial behavioral plans in the classroom.

Traumatic Brain Injury Act

The Traumatic Brain Injury Act (TBI) of 1996 was signed by President Bill Clinton and was the first federal legislation that addressed the needs of individuals with TBI. There have been multiple amendments and reauthorizations of the TBI Act, with the most current being the TBI Program Reauthorization Act of 2018.

The purpose of the TBI Act was to:

• •

  Reduce the incidence of TBI through prevention and surveillance projects conducted by the Centers for Disease Control and Prevention

• •

  Conduct TBI research through the National Institutes of Health

• •

  Improve access to rehabilitation healthcare and related services by state grants authorized by the Health Resources & Services Administration, which was later transitioned to the Administration for Community Living

Independent medical examination

Requests for an independent medical examination (IME) generally come from attorneys, insurance companies, government agencies, or employers. During an IME, an examiner assumes a unique role that entails certain expectations:

• •

  Evaluate a patient as an independent examiner, not as a treating physician. Keep in mind that there is no therapeutic relationship, no expectation of ongoing care, and a limited duty of confidentiality.

• •

  Do not provide medical advice or care during or after the interaction and inform the examinee of the unique role of the independent medical examiner and the evaluation.

• •

  Perform the examination using standardized, widely available, and evidence-based methods.

• •

  Be aware that the examinee may be ambivalent or even hostile during the interaction and that the examinee may withhold information or even fabricate or exaggerate symptoms for secondary gain. Inform the examinee that incomplete effort, bias, or withholding of information will be documented.

• •

  Use symptom validity tests to detect evidence of response bias.

• •

  The ideal approach has been summarized as one of “trust but verify.”