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Modules:

  • 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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    Back to Module 3: Whole-Patient Assessment
    Nine Dimensions

    Step 4. Decision-Making Step 5. Communication & Information Sharing

    Step 4. Decision-Making Capacity

    • Assessment of decision-making capacity:
      • Follows naturally from a psychological assessment

      • Is fundamental for planning care
    • In order that decisions can be made with the patient’s (or parents’ if the patient is a child) authentic understanding and agreement, it is important to:

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    Capacity/Competence

    Global Incompetence

    • Patients who are globally incompetent:
      • Are not competent in any area of functioning

      • Cannot handle their own affairs and must rely on others

      • Cannot give meaningful consent to any particular health care decision
    • Under such circumstances, prior preferences must be considered, as expressed:
    • However, among patients with advanced illness, it is quite common that the patient has some compromised mental function without being globally incompetent
      • Capacity may only be limited with respect to questions whose answers rely on careful analysis

      • Decisions based on firmly held beliefs may still be authentic

      • Consequently, it is generally helpful to include the patient as much as possible even when there is some mental compromise

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    Decision-Specific Capacity

    • A patient who does not know where he or she is, and who can no longer manage his or her own affairs, may nonetheless have deep and meaningful insight into whether or not an amputation, intubation or some other major medical intervention is acceptable
    • To afford that individual the full patient role in informed consent, the physician needs to determine whether the patient can:
      • Understand that he or she is authorizing the decision

      • Demonstrate that he or she is making accurate and rational inferences with the information given

      • Demonstrate insight into the consequences of the decision

      • Be free of coercive influences
    • For example...If the patient has a near certain progression to sepsis and death in the absence of amputation:
      • Capacity to decide must be in doubt if:

        • The patient says that amputation is unnecessary for survival

        • The patient agrees with the amputation but seems to think this is someone else’s operation or that the decision is not his or hers to make

      • If, on the other hand, the patient holds the view that death is better than amputation at this stage, a decision not to operate might be understood to reflect rational use of the information
    • If a patient is declining life-prolonging intervention in circumstances that include a strong sense of family burden or professional abandonment, such a decision may be unduly influenced by others’ agendas and should be carefully revisited in order to reduce and separate out conflicting interests from those of the patient
    • If capacity is absent for the decision at hand, involve the proxy and share the decision-making in the usual fashion, with the proxy speaking in the patient’s role

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    Goals of Care

    • Whether you are working directly with the patient or with the patient’s surrogate, assess what are the goals for care
    • If a patient has made the transition away from hope of cure to a focus on quality of life, it is important to relate goals of care to matters of personal meaning
    • Ask the patient what he or she thinks are the most important things to accomplish now
    • A range of possible goals should be explored, from aggressive comfort care to prolonging life until a certain meaningful event (see Module 7: Goals of Care)

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    Advance Care Planning

    • Planning ahead for future care is only a small step from assessing goals for present care
    • Timing of the advance care planning assessment:
      • Wherever possible, start the discussion at the initial assessment

      • This assessment may be left for a subsequent visit depending on:

        • The stamina of the patient
        • His or her expectations
    • Pick a couple of likely scenarios, given the patient’s current illness, and ask about:
      • What would be the goals for care in such a circumstance

      • A few key treatment decisions

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