Ethical Considerations

Teresa A. Savage

DEFINITIONS

• Ethics are a “set of moral principles; a theory or system of moral values” [1].

• Various theories and frameworks can be used to analyze ethical considerations, including a focus on principles, relationships, virtues, consequences, rules, or processes.

• Traumatic brain injury (TBI) can pose unprecedented ethical dilemmas about what it means to live a good life. There are webs of lives affected by one injury [2].

• Core principles of biomedical ethics [3] include:

Beneficence: providing benefit and balancing risks to bring forth the best results

Respect for autonomy: fostering self-determination and respecting individual differences

Nonmaleficence: doing no harm

Justice: upholding concepts of fairness and equity

• Clinical ethics involves analyzing and resolving practical ethical issues, drawing on an analysis of medical indications, patient preferences, quality of life (QOL), and contextual factors [4].

• Ethical issues may arise when there are competing interests or values, or disagreements about the “right” or “wrong” way to approach a problem; terms such as moral dilemma, moral uncertainty, and moral distress describe the tension between the perceived course of right action and constraints [5].

Ethical considerations in TBI range from withdrawal of life support decisions in severe TBI to the ability of a participant with a mild TBI to consent to a low-risk research project. There are numerous frameworks and philosophies that can be used to analyze ethical issues in TBI. The nature of the injury, striking at the core of the sense of self and personhood, can lead to philosophical and practical ethical considerations. The list of factors to consider is presented as a starting point to understanding the complexities involved.

PARTIAL LIST OF ETHICAL ISSUES IN TBI

In the Acute Phase

• Decisions about withdrawal of life support; prognostic information is critical for the surrogate decision maker; advance directives may also be helpful if the patient addressed conditions under which he or she would not want to be treated.

• Palliative sedation for patients with TBI; this is sedation used in patients with TBI when mechanical ventilation is being removed in the context of withdrawal of care. The controversy is that it may accelerate death, so it should only be used when death is imminent, such as when nearing herniation [6].

• Pervasive nihilism; the patient’s condition is viewed as hopeless; “marginalized and sequestered from the evolving fruits of neuroscience” [7]; palliative care recommendations and consent for organ donation are discussed before a diagnosis and prognosis are clear [7].

• Diagnostic and prognostic uncertainties and communication of same; for example, survivors’ families describe a predatory “hovering” when organ donation has been discussed but the diagnosis of brain death has not been confirmed [8].

• Requests from families for novel diagnostic and therapeutic interventions; through the Internet, families learn of possible interventions being studied and may desire these for the patient, but the intervention is only available through participation in research, and efficacy has not been established.

• Honoring advance directives to stop treatment when they conflict with the expressed wishes of the “current” patient to continue treatment.

• Decision to have a guardian appointed; this can be burdensome for families without financial means to afford the guardianship process.

• Decisions for the unbefriended, incapacitated patient; prior wishes are unknown and the lack of family or friends may influence treatment and discharge decisions.

In the Acute Rehabilitation Phase

• Consideration of preinjury and postinjury interests and “selves”; often persons with TBI have personality changes and will no longer seem like the same person to family and friends, which makes surrogate decision making more challenging.

• The reverberating impact of the injury on the family system; the patient’s role in the family may change drastically if the patient is no longer able to return to work or fulfill roles as a husband/wife, father/mother, or son/daughter.

• Assessment of decision-making capacity (see also Chapter 42).

• Decisional capacity versus performative capacity (see also Chapter 42).

• QOL judgments by persons other than the injured patient; the surrogate decision maker may hold the view that the QOL would be unacceptable to the patient, so requests a “Do Not Resuscitate” order be placed, and/or tube feedings be discontinued.

• Identifying surrogate decision makers; in the absence of a durable power of attorney for health care, or state statute, it may be difficult to identify a surrogate decision maker. In some cases, a couple may be separated, but not divorced, so the spouse would be the surrogate, yet another family member or a new partner may wish to be the surrogate.

• Assent versus consent in medical decision making; patients may not be able to give consent, but assent (an affirmative agreement) for treatment or participation in research should be obtained if the patient is capable.

• Infantilization of adults with TBI; although the patient may only be able to understand gestures or two-word phrases, the patient should not be treated as though he or she is a child.

• Use of behavioral restraints; most facilities have explicit policies and procedures for use of chemical or physical restraints when the patient poses a risk of harm to self or others; use of restraints should be the last resort.

• Access to and timing of acute rehabilitation in order to maximize benefit of intense rehabilitation; some patients may benefit from intense rehabilitation later in their recovery process, but the concern is that they may not be assessed daily so that they can be transferred to a more intense level of rehabilitation when they have reached a specified level of recovery. The patient may have limited insurance coverage for acute rehabilitation and navigating the system to secure therapy at the optimal time may be overwhelming to the patient’s family. Access to health care and social services; depending on the location and family support, patients may have barriers in accessing primary and specialty care in the community and social services, such as transportation, personal assistants, vocational rehabilitation, and mental health services.

• Safe discharge options; some patients may not recognize their deficits or they disagree with the rehabilitation team that their discharge arrangements put them at risk of harm; discharge can be especially challenging if the patient desires to return home, yet lacks support from family or friends or the financial resources to hire assistance in order to live at home.

• Allocation of resources; access to services can depend on where a patient lives, how persistent and resourceful family can be to find services, and whether equipment, supplies, and services are deemed medically necessary.

In Postdischarge Recovery

• Accountability for behavior and decisions; at what point in the recovery process should patients be held accountable for their decisions and actions?

• Anosognosia; some patients lack of insight into the deficits caused by the brain injury.

• Participation of vulnerable populations in research; if the research holds out a possibility of benefit in balance with potential risks, should a surrogate decision maker give consent for the patient to become a research subject? If there is no possibility of benefit to the patient, but there may be knowledge to be gained for future patients, should the surrogate consent for the patient?

• Undiagnosed and untreated psychiatric sequelae of TBI; mental health services in the community for patients with TBI are often difficult to find; insurance may cover therapy for the patient only and not for any family therapy.

• The role of spirituality in adjustment to TBI; patients may struggle with their faith in understanding why they experienced misfortune.

• Addressing biases and stigma associated with cognitive disability; integrating back into the patient’s former community may be challenging when friends and coworkers do not understand the changes in the patient; patients may experience discrimination faced by many people with cognitive, intellectual, or mental health disabilities.

Broader Social Issues

• Public health advocacy: Gun control, helmet laws, concussion, and responsibility in professional sports.

• Reintegration into the community versus long-term care.

• Return to work (same job) versus lower status, lower paid employment; patients may ask physicians to be less than truthful when documenting their abilities and limitations so they may return to their previous positions.

QUALITY OF LIFE

QOL is hard to define and measure [9]. Health care providers often rate QOL lower than people living with a disability [10]. Notions of a “good” life change over time and with new life experiences. The best interest standard is often used to discuss QOL, but factors such as the severity of the injury, access to services, premorbid personality characteristics, and social support can complicate the notion of what is in the patient’s best interest. Family members and surrogate decision makers are dealing with their own emotional reactions and fears, and may not make decisions based on a “substituted judgment,” or what the patients themselves would want. Understanding the values, preferences, hopes, and life satisfaction of persons with TBI is important in exploring ethical issues.

SENSE OF SELF AND PERSONHOOD

TBI raises dilemmas about a sense of self and personhood. Are individuals fundamentally changed if their personalities, memories, or functional capacities are altered? The definition of personhood is distinct from personality, and various legal, theological, and philosophical theories define the concept in specific ways [11]. Vegetative states, minimally conscious states, and other disorders of consciousness raise fundamental issues about how we define the self in relation to QOL, prognosis, and time postinjury [12].

MISDIAGNOSIS

Misdiagnosis of vegetative state and minimally conscious state is common; as many as 30% to 40% of patients diagnosed in vegetative state retain some consciousness [7]. Inappropriate management, including pain management, can occur when patients are misdiagnosed. Unfortunately, premature withdrawal of life-sustaining treatment occurs in a high percentage of patients, often within 72 hours of injury [7].

ISSUES TO CONSIDER BASED ON BIOETHICAL PRINCIPLES

A. Beneficence

1. Best interest of the patient

2. Who defines best interest?

3. Benefits and burdens of each treatment

4. Use of evidence-based guidelines in medical decision making

5. Clear communication of information

B. Respect for patient autonomy/self-determination

1. What is the patient’s current decision-making capacity?

2. Do they have an advance directive?

3. Have they identified a surrogate decision maker?

4. Has the patient made his or her preferences known? When?

5. Has the TBI fundamentally changed the patient’s sense of self?

6. Should the advance directive be honored if the patient is improving and may regain capacity, but the surrogate wants to stop treatment?

C. Nonmaleficence

1. Refers to harms of action as well as harms of inaction

2. If the patient does not fully understand what is being considered, is he or she being harmed?

D. Justice

1. Discrimination on the part of health care providers and society at large because of diagnosis (e.g., assuming the person lacks capacity)

2. Allocation of resources: medical, social, and financial

3. Public health’s precautionary principle: “anticipatory preventive action in the face of uncertain scientific evidence” [13, p. 177]. For example, there is increasing evidence that professional football players who experience repeated concussions are at risk of developing chronic traumatic encephalopathy. The precautionary principle suggests that action to protect population health, particularly for children and teens playing in youth or high school football, should be taken without waiting for confirmatory evidence.

APPROACH TO CLINICAL ETHICAL ANALYSES

A. Identify the moral dilemma, moral uncertainty, or moral distress

B. Determine the facts of the case

1. Medical: diagnosis, prognosis, deficits, risks and benefits of treatment, and goals of treatment

2. Social: family members, living situation, social support, occupation, goals, and experiences with the health care system

3. Spiritual and cultural: belief systems, values, and religious practices that may influence treatment decisions

C. List the stakeholders and the nature of their interests (e.g., patient, family, health care providers, facility, payers, community members, and others?)

D. Name the problem/dilemma(s):

1. Values in conflict

2. Communication difficulties

3. Applicable laws and/or institutional policies

4. Violations of codes of ethics

5. Limited resources

E. Gather additional information

1. Are there any perspectives missing?

2. Where are you getting your facts? Who is telling the story?

3. To what degree does prognostic certainty factor in?

F. Consider the alternatives

1. List arguments for and against each alternative

2. Eliminate options that are “out of bounds” (illegal, unethical, against policy)

3. Examine how each remaining alternative may affect the patient and other interested parties

4. Are the choices consistent with the patient’s moral, religious, or social beliefs? With the family’s beliefs? With the team members’ beliefs?

5. How far does the patient’s autonomy extend if he or she wants to be discharged to home and the family does not feel confident in providing 24-hour care and supervision?

6. Examine the fairness of an action

7. Will the action build goodwill?

8. Who ultimately makes the decision/takes action?

G. Implementation and follow-up

1. Identify next steps

2. Determine the extent of agreement on a course of action consistent with the patient’s wishes and acceptability to family and health care team

3. Decide who should be informed

4. Informed refusal, that is, when a patient with decisional capacity refuses recommendations for nursing home placement but has no family or resources to hire caregivers

5. Learn from the case: What went right? What went wrong? What would you do differently in the future? [4,14].

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