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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 1: Advance Care Planning
    Five Steps for Successful Advance Care Planning

    Step 2. Engage in Structured Discussions

    Step 3. Document Patient Preferences

    Step 2. Engage in Structured Discussions

    Proxy Involvement in Advance Care Planning

    • Why should the proxy decision maker be involved in advance care discussions and planning?
      • So that he or she can have a thorough and explicit understanding of the patient’s wishes

      • To ensure a common understanding that can be invaluable if the proxy and physician are later called on to collaborate in decision-making
    • What is the appropriate role for the proxy during the initial discussions?
      • Listen
      • Take notes
      • Ask questions for clarification

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    Proxy Involvement in Future Medical Care Decision-Making
     

    • As part of the advance care planning process, the patient should specify the role he or she would like the proxy to assume if the patient is incapacitated
    • Proxies may...
      • Try to implement specific treatment choices

      • Try to decide according to the patient’s best interests

      • Decide by taking into consideration the interests of all parties that the patient cares about (substituted judgment)

    • While these possibilities often coincide, they may not and it can be very helpful for the patient to decide which standard is most important to him or her
    • In all cases, the proxy will need to work with the physician and, in general, should have the same participation in decisions that the patient would have had
    • Most commonly, the proxy uses a blend of standard and his/her own best judgment based on the situation and what he/she knows about the patient’s wishes. This allows for unexpected factors that could not be anticipated during the advance care planning process

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    Patient and Proxy Education: Describing Scenarios and Options for Care

    Purpose of Patient/Proxy Education

    • At the core of advance care planning is:
      • The empowerment of the patient (or parents if the patient is a child)
      • The preparedness of the proxy
    • Both usually require some education, time for reflection, and discussion
    • In order to make informed choices, the patient must understand:
      • The meaning of the various clinical scenarios under discussion
      • The benefits and drawbacks of the various treatment options
    • Therefore, the discussion should provide insight into...
      • Types of clinical scenarios that might arise
      • Types of decisions that proxies most commonly face

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    Important Components of Patient/Proxy Education

    • Define key medical terms using words the patient and proxy can understand
    • Explain the benefits and burdens of various treatment options (e.g., life support on a ventilator may only need to be used for a short time if the underlying problem is reversible)
    • Because recovery cannot always be predicted, help patients to consider situations involving:
      • Uncertainty
      • Incomplete recovery
      • Death

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    Elicit the Patient's Values and Goals

    Strategies for Facilitating Discussion of Values and Goals

    • There are a number of ways to facilitate a discussion of the patient's values and goals related to health and illness...
      • Ask about past experiences, including...
        • the patient own
        • those of other people the patient knows

      • Describe possible scenarios and ask the patient what he or she would want in such a situation
    • As a range of clinical situations is reviewed with the patient, it will be possible to get a sense of where thresholds exist for withdrawal or withholding of care

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    Responding to the Patient

    • Help the patient to articulate his/her own general principles, values, and goals for care in given situations and specific treatment wishes
    • Consider asking the patient if he or she wants to write down in a letter to the physician how such things should be handled
    • Some patients and proxies will have an emotional response to the material. Respond to the emotional reactions. Responding to emotions in the context of an interview is discussed in Module 2: Communicating Bad News

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    Use a Validated Advisory Document

    Why Use a Worksheet?

    Worksheets or other carefully developed and studied tools (such as a linear or interactive videotape or a software program) can help...

    • Guide the advance care planning discussion
    • Identify the patient’s values and attitudes regarding health and medical care across a range of:
      • medical situations
      • possible goals
      • treatment choices
    • Capture patient preferences
    • Clarify the patient’s personal threshold for use/nonuse of interventions by going through various scenarios and options
    • Identify and define the roles of proxy decision-makers

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    Essential Components of Advisory Documents

    • In all cases, the worksheet should...
      • Include a range of potential scenarios that patients should consider

      • Elicit the patient’s values and goals related to health and medical care in general terms

      • Include the most common life-saving interventions
    • If a patient already has a life-threatening condition, the conversation may be more focused on specific scenarios and treatment issues. For example...
      • The patient with end-stage cardiomyopathy needs to consider the issues of cardiopulmonary resuscitation (CPR) and the role of intensive care units

      • The patient with end-stage renal disease must consider dialysis

      • The patient with advanced AIDS needs to consider dementia and respiratory failure

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    Advantages of Worksheets

    • A number of validated worksheets are available to choose from (see Resources section)
    • Worksheets provide a consistent approach
    • Worksheets are easy to use
    • Worksheets reduce the chance that important information will be left out or framed in a biased way
    • The preferences worksheets elicit tend to be reliable and durable reflections of the patient’s wishes
    • Once they are complete, worksheets can serve as a resource that the patient, proxy, and family members take home
    • Worksheets may also be able to serve as a formal advisory document
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