Elicit Values and Preferences

  • Probe about values and preferences. If they have done ACP well, they may be clear on their values and able to articulate preferences. If not, they may need some assistance and time with this task. Check if the patient needs more information about the various medical options at the end of life (e.g. What it means to be resuscitated or go to the ICU):
    • "There are lots of different ways we can treat patients. Knowing more about you will help us make sure you are getting the treatments that are RIGHT for you. What is important to you when considering health care decisions?" and/or

    • "What are your hopes or personal goals as your illness progresses?"

      OR

    • "We want to make treatment decisions that honor what's important to you. What sort of quality of life would you find acceptable, and what would you find unacceptable?"

      OR

    • "What is important to you as you think about the future?"

TIPS

  • Use hesitant, hypothetical language to broach this issue sensitively if the patient doesn't seem to want to address it directly.

    Say: "Suppose (say slowly).... your condition were to worsen, what concerns would you have OR what medical treatments would you want or not want?"

  • Following the clarification of their values and preferences, using a shared-decision making approach, determine the overall goals of care:
    • "Given what you've told me and what I know about your illness it sounds like [insert what you've heard here, e.g. trying to "prolong life" or "focusing on comfort" or
      a mixture of..." is important to you now. Have I understood your goals of care correctly?"
  • Once there is agreement on the overall goals of care, you need to reduce this general statement about goals to specific orders for medical treatments to be used or not used in the context of serious illness. You do this by proposing what treatments may work or should not be considered and seeking affirmation from the patient that this is acceptable.
    • "Based on what you said, it seems like {propose treatments that you do or do not recommend} would be in your best interest. How do you feel about that?"

      OR

    • "Based on what you've said, it seems like cardiac resuscitation or using breathing machines to prolong your life are not going to benefit you in your situation. We will still do all possible to keep you comfortable and treat reversible illness but in the event your heart and lungs stop, these life-sustaining treatments will not be used."

      OR

    • "Given what you have told me about yourself and what I know of your medical condition, I do not think that resuscitative measures are right for you."

    Consult your local institution policies and procedures on how exactly to document this conversation and the resulting medical orders.

    Note: Trying to prolong life does not equate to offering CPR. When CPR is very unlikely to meet the patient's goals, discuss the other interventions that may be helpful, e.g., hospitalization, antibiotics, chemotherapy.

TIPS

  • Some patients or families may not cope with the stress of medical decision-making during serious illness. If in the response to your open-ended questions you perceive maladaptive coping, consider being more directive and use declarative sentences to explain prognosis and appropriate treatments, such as: "The cancer has spread despite our best treatments and I would like to involve health care providers (e.g. home care nurses, palliative care team members) that can help to provide the support you need and to talk through any decisions that need to be made."
  • While most patients (and families) prefer a shared-decision making model, some will prefer to make the decision themselves (autonomous or active decision-makers). You can still make it easier on them by legitimizing the difficult decision by saying something like: "I respect that you want to make the decisions yourself. My role is to ensure you are aware of the risks and benefits of various treatments. My hope is to continue to share this information with you. From my experience and clinical training, most people in your situation would benefit from {say what you think is the best treatment option}, but think about it and we can talk again." Be careful not to use "what do you want us to do" because that places decisional responsibility on the patients (or family). This may worsen their stress and anxiety if they want to play a passive or shared decision making role.
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