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  • Introduction
  • 1. Advance Care Planning
  • 2. Communicating Bad News
  • 3. Whole Patient Assessment
  • 4. Pain Management
  • 5. Assisted Suicide Debate
  • 6. Anxiety, Delirium
  • 7. Goals of Care
  • 8. Sudden Illness
  • 9. Medical Futility
  • 10. Common Symptoms
  • 11. Withholding Treatment
  • 12. Last Hours of Living
  • 13. Cultural Issues
  • 14. Religion, Spirituality
  • 15. Legal Issues
  • 16. Social and Psychological
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    Legal Issues

    Deciding for the Patient without Decision-Making Capacity: Legal Devices

    Deciding for the Patient without Decision-Making Capacity: Legal Devices

    Determining and Declaring Decision-Making Incapacity

    • Few patients with life-threatening illnesses retain decision-making capacity until the moment of their death
      • Most patients endure some period of incapacity

      • Limitation of life-sustaining treatment possible for patients who lack decision making capacity

      • However, it is necessary to first
        • Determine incapacity
        • Arrange for proxy decision-making
    • Court of law may determine a patient to be incompetent and appoint a guardian to make important decisions, including those concerning health care, for the patient
    • Many patients who have not been declared incompetent by a court may nonetheless have problems with their capacity to make health care decisions
    • 3 elements of the capacity to make health care decisions
      • First, ability to comprehend or understand the information about the medical problem

        • Appreciate the impact of the disease
        • Consequences of various options for treatment, including forgoing treatment

      • Second, ability to evaluate the options

        • Compare risks and benefits of each option
        • Deliberate in accord with the patient’s own values
        • Make choices that are not irrational
        • Maintain a consistent choice over time

      • Third, the patient should be able to communicate his or her choice
    • Generally, determination of the capacity to decide on treatment must relate to:
      • Individual abilities of the patient

      • Requirements of the task at hand

      • Consequences likely to flow from the decision

      • Thus, when the consequences for well-being are substantial, there is a greater need to be certain that the patient possesses the necessary level of capacity
    • A lack of decision-making capacity may be caused by any break in the chain of decision-making
      • Ability to understand, to reason and evaluate, and to communicate a decision

      • Obviously, patients in a coma, infants, young children and the profoundly mentally disabled lack decision-making capacity for all medical decisions

      • Some other patients, such as those at the end of life with significant metabolic abnormalities, some disorientation, or early dementia may retain some degree of decision-making capacity

      • Physicians taking care of patients at the end of life should make a determination of the patient’s decision-making capacity before presenting the patient with significant health care decisions
    • Declarations of incapacity can be done through
      • Formal, legal statement

      • Simply recording evaluation of the primary physician or psychiatrist in medical record (usual method)
        • Recorded evaluation should document the basis for declaring the patient incapacitated

        • Record of the patient’s lack of decision-making capacity as determined by 2 physicians
          • May be required before a power-of-attorney for health care can be activated

        • Most declarations of incapacity should be for
          • Limited scope of the decision at hand
          • Record should indicate limitations to the scope

        • Subsequent decisions require reevaluation


    Decisions for the Incapacitated: Two Criteria Used by Courts to Decide Life-Sustaining Treatment

    • Determination that treatment would not be in the best interests of the patient
      • For example, one court applying the test determined that for a patient in a persistent vegetative state, it is not in the patient’s best interest to continue treatment
    • Proxy’s substituted judgment to determine whether the patient would have wanted treatment withheld if he or she had been competent
      • Takes into account the patient’s subjective wishes
      • Application of advance directives uses the substituted judgment criterion



    • Traditionally, if the patient has made no other provisions, the mechanism for making both medical and nonmedical decisions for incapacitated patients has been to establish a legal guardian, that is, a person with legal guardianship
    • End-of-life decision-making for patients who have never had decision-making capacity (eg, infants and young children, or developmentally disabled adults) generally requires an individual who is legally able to act in the patient’s best interest, such as a parent or guardian
    • Additionally, federal regulations (so-called Baby Doe regulations) apply to end-of-life decisions made for infants and newborns
    • But this mechanism has a number of disadvantages for the average life-threateningly ill patient
    • The guardianship process is often slow and costly for the patient or family
    • Moreover, the guardian is normally expected to make decisions using the traditional best interest standard, which does not always rely on the patient’s previously expressed preferences
    • For the parent/guardian of a mature adolescent patient, the conversations eliciting the patient’s wishes are difficult
    • Consequently, they may not have taken place
    • For most adult patients at the end of life, legal guardianship is an option of last resort for making health care decisions. It may, for instance, be used if the proxy is clearly acting against the patient’s interests and needs to be replaced


    Advance Directives

    • Over the past 2 decades, courts and legislatures have recognized legal tools called "advance directives" as valid indicators of patients’ previously expressed desires
    • Terminology may be confusing
      • The process of discussion, documentation, and implementation of wishes is termed advance care planning

      • The most common of the advance directives are:

        • Living will--a form of instructional directive to limit life-sustaining medical treatment in the face of a life-threatening illness

        • Durable power-of-attorney for health care--an appointment of a health care agent or proxy to make decisions according to the incapacitated patient’s preference

        • Other types of instructional directive include
          • Personal letters
          • Values history
          • Medical directive

        • Advance directives give immunity from successful prosecution to physicians who, in good faith, follow the directive

        • Advance directives
          • Statutory documents created by state legislatures
          • Advisory documents that act as evidence of patient wishes
          • Binding under common law beyond state borders

        • Moreover, state legislatures may direct that health care providers honor other states’ advance directives

        • As a result of the Patient Self Determination Act
          • States are required to recognize at least 1 form of advance directive


    Surrogate Decision-Making

    • Majority of individuals do not complete advance directives
    • As a result, a number of states have enacted surrogacy laws (eg, Illinois)
      • Under these laws, patients without advance directives who become incapacitated may have a decision-maker

        • Appointed from a list of eligible individuals, including a spouse, family member, or others as prescribed by statute
        • The hierarchy of the individual’s eligibility may vary from state to state

      • Legal recognition to a process that many physicians used in the past when no one had been appointed as guardian—namely, turning to the person most likely to be recognized as the appropriate representative of the patient
    • In states without surrogacy laws, physicians often rely informally on next-of-kin hierarchy
    • Once a surrogate is identified, he or she must determine the patient’s wishes regarding end-of-life treatment
      • Where the patient has advance directive, this may only entail interpreting the directive

      • Most states require surrogate to determine that it is more likely than not that the patient would have made a particular health care decision

        • Known as the preponderance of evidence standard, expressed as "more probable than not"
        • Some states require a higher degree of certainty

          • Clear and convincing evidence
          • Higher standard than preponderance of the evidence that the patient would have chosen a particular course of action
    • The difficulty in determining whether verbal expressions of health care preferences meet these standards reinforces the importance of written advance directives
      • For example, a general comment made by the patient that he or she "would never want to live as a vegetable"

      • Does not give a great deal of guidance as to whether to discontinue life support after an accident that leaves the individual with significant brain damage, but not in a persistent vegetative state (see Module 1: Advance Care Planning).
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