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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 7: Goals of Care
    Goals of Care

    7-Step Protocol to Negotiate Goals of Care
    Identifying Goals to Hope For
    Cultural Considerations
    Communicating Prognosis Use of Language
    Setting Goals and Priorities for Treatment and Care
    Decision-Making Capacity

    7-Step Protocol to Negotiate Goals of Care

    For many physicians, negotiating goals of care with patients and families who are facing the end of the patient’s life can be difficult, particularly when there is a conflict between aspirations and what is medically likely or possible. To have a greater chance of achieving a successful outcome, physicians might use the following modification of the 6–step protocol for communicating bad news (see Module 2: Communicating Bad News).

    1. Create the right setting

    • Sit down
    • Assure privacy and time

    2. First, determine what the patient/family know

    • Clarify the current situation
    • Understand the context in which decisions about goals of care should be made
    • For example,
      • if the patient thinks he or she has indigestion and the physician thinks it is life-threatening myocardial infarction,

      • the determination of goals of care will have to wait until there is agreement on the clinical situation

    3. Ask how much the patient/family want to know and discuss with you

    • If they do not want to discuss goals of care, determine whom you should talk to
    • Some patients and families will ask the physician to decide
    • When there is time, try to engage them in the decision-making process rather than provide them with answers

    4. Explore what they are expecting or hoping for

    • Focus on what you will do to help them achieve those goals
    • As appropriate, identify those things that you can’t do, either because they will not help achieve the goals or because they are not possible

    5. Suggest realistic goals

    • As the physician brings a wealth of scientific knowledge about the patient’s illness, its natural course, the experience of patients in similar circumstances, and the effects that contemporary health care may have, this must be shared to assist with decision-making
    • Suggest realistic goals (e.g., comfort, peace, closure, loving care, withdrawal of interventions, etc) and how they can be achieved
    • Work through unreasonable or unrealistic expectations

    6. Respond empathically to the emotions that may arise

    7. Make a plan and follow through

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    Identifying Goals to Hope For

    • False hope may deflect from other important issues
      • One of the chief obstacles to negotiating goals of care in the face of life-threatening illness and poor prognosis is the issue of hope (the feeling that what is wanted will happen)

      • Unfortunately, this false sense of hope may deflect the patient and family from finding final meaning and value, and closing their lives together

      • At a time when people most need closeness, the collusion of a lie may serve to push them apart. When surveyed, most Americans said they would rather know the truth about their illness

      • All physicians would agree that a positive attitude and a sense of hopefulness should be maintained throughout the course of an illness
    • True skill to help find hope for realistic goals
      • The true skill of the physician is in his or her ability to help patients and families find hope for realistic goals, which can change with time

      • Some physicians find it useful to frame discussions using words like:

        • Everyone hopes to win the lottery, but it’s not appropriate to plan your life as if you are going to win the lottery

        • We can hope for the best, but we also need to plan for the worst

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    Cultural Considerations

    • Cultural differences may require the physician to modify his or her approach to determining goals for care
    • Some cultures prefer that medical information, particularly that of a life-threatening prognosis, be given to the family and not the patient
    • Among other cultures (e.g., some Navajos), it is not good to raise a negative prospect at all
      • Moving the conversation to the third person may circumvent this:

          "If you were hearing a story about someone who was facing an illness that could not be cured...how would you want that story to describe how best that person could be helped?"
    • As cultural generalizations may not apply to given individuals, it may be a useful approach to ask the patient early on in the relationship.

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    Communicating Prognosis

    Tendency to Overestimate Prognosis

    • Patients and families rely on physicians for answers to 2 fundamental questions when they seek medical care:
      • "What is wrong with me?" and
      • "What will happen to me?"
    • Prognostication is never easy
      • Studies suggest that evidence-based prognostication does not explain customary medical practice

      • Even when physicians refer patients for hospice care, they tend to markedly overestimate prognosis

      • Consequently, patients live for only days or weeks once referred to home hospice care, rather than the months of life that the physician thought remained

      • In the SUPPORT study, physicians tended to make significant errors in both directions (overestimates and underestimates) when predicting the lifespan for patients in the ICU

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    Understanding Helps Coping and Planning

    • Prognosis is crucial to patients and families for several reasons
    • Most importantly, an understanding of what might happen helps them to cope, respond, and plan for their future
    • Without reasonable information about what the future is likely to bring, patients and families may choose treatments they would otherwise decline, and miss important opportunities for growth and life closure
    • Knowing that life is likely to be short may open opportunities for increased support from the health care system (e.g., they may be eligible for the Medicare Hospice Benefit if the patient’s prognosis is less than 6 months)

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    Ways of Communicating Prognosis

    • Consider offering a range that encompasses average life expectancy (e.g., hours to days, days to weeks, weeks to months, or months to years)
    • Alternatively, consider offering averages: "People with your (your child’s) illness circumstances can live for a long or a short time. About half live for about 3 months"
    • There is a lot variation for the other half: Some find it is best to plan for little time, and hope for more time
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