Domain 1 - Patient and Family Centered Decision Making

  • Recognize the patient and the family as the unit of care:
    • Assess and document who comprises the family; it may not be a traditional one.
  • Assess the patient's and family's decision-making style and preferences:
    • Clarify and document level of participation patient and/or family desire in choosing treatment options.
  • Address conflicts in decision making within the family and between staff and family:
    • Explicitly address conflicts that arise within families and help families resolve these conflicts.
    • Explicitly address conflicts that arise between staff and family members.
    • Train staff in conflict resolution techniques.
  • Assess together with appropriate clinical consultants, the patient's capacity to participate in decision-making about treatment and document assessment.
  • Initiate advance care planning with the patient and family:
    • Take the lead in involving patient and/or family in treatment decisions by convening a family conference with members of the health care team and available family members. If patient is able to participate, hold conference at the bedside.
  • Clarify and document the status of the patient's advance directive:
    • If the patient has completed an advance directive, review with the patient and/or family upon admission to the ICU and document discussion
    • Place the advance directive in the chart and "flag" the chart.
  • Identify the health care proxy and surrogate decision-maker:
    • For patients who lack decision-making ability, assess and document the family's knowledge of the patient's verbal wishes and goals about treatment.
  • Clarify and document resuscitation orders:
    • Distinguish do-not-resuscitate (DNR) orders from withholding and withdrawing life-sustaining treatment; policies and guidelines for these should be distinct.
    • Document discussions with patient and/or family about cardiopulmonary resuscitation (CPR).
    • Utilize preprinted "family discussion sheet" where informal and formal discussions with family members may be documented.
  • Assure patients and families that decision making by the health care team will incorporate their preferences.
  • Follow ethical and legal guidelines for patients who lack both capacity and a surrogate decision-maker:
    • Establish a written policy detailing these guidelines.
  • Establish and document clear, realistic and appropriate goals of care in consultation with the patient and family:
    • Ensure that treatments reflect the goals of care.
    • Identify a time frame for the reassessment of treatment goals and set up follow-up meetings with the patient and/or family to discuss progress towards goals.
  • Help the patient and family assess the benefits and burdens of alternative treatment choices as the patient condition changes.
  • Forgo life-sustaining treatments in a way that ensures patient and family preferences are elicited and respected:
    • Develop pathways to improve the quality of care in the setting of withdrawing life-sustaining treatments.

Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families.

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