The Canadian Researchers at the End of Life Network (CARENET) is a group of health care professionals from across the country that collaborate with each other to understand and improve palliative and end-of-life care.

 

Allow for Questions and Resolve Outstanding Concerns

  • At some point, you should give the patient an opportunity to address unresolved concerns or questions and express fears. This may have come up earlier in the conversation but if not, ask:
    • "What are some questions you might have?"
    • "What are some of the questions you have about your goals of care?"

      OR

    • "What are your worries or concerns?"

      OR

    • "Tell me about your fears about what lies ahead for you?"

Confirm Substitute Decision Maker

  • Nominating an individual to be a Substitute Decision Maker (SDM) and making sure they are on the same page with respect to the patient's wishes and the medical orders is the final step. If the patient has already engaged in advance care planning, this step may have already been completed. If not, ask:
    • "If you are unable to speak for yourself about medical decisions, who do you want to speak for you?"
  • Explore if they have discussed their wishes with family, SDM, health care providers.
    • "Have you talked to {call the SDM by name or your family} about your wishes and these goals?"

TIPS

  • At any time, if the conversation is not going well (you feel stuck, the patient is confused, you are embroiled in conflict, or the patient is insisting on what you consider to be non-beneficial treatments), back up and try the following approach to getting the goals of care conversation back on track:
    1. Explain your motives:

      "I talk with all my patients about this and I am asking you these questions because I am concerned about your health."

      OR

      "When people get sicker, they often lose the ability to think clearly and to tell their doctors about the kind of care they want. This leaves families and doctors guessing about how aggressive to be or when to focus on comfort as the goal. This can be distressing for all, including that person. Can you help us understand what is important to know about you so that we can best care for you now and in the future?"

    2. Clarify your understanding of their values. Make sure you are understanding what they are saying about their values and preferences. If they seem conflicted or uncertain about their values, consider values clarification tools such as the 'Graphic Value History Tool' or the Speak Up Campaign workbook found at www.advancecareplanning.ca under the tab "Make A Plan".
    3. Reassess their informational needs - do they need more information about their medical illness, the proposed treatments and risk, benefits and outcomes of the proposed treatments. Consider using formal decision aids such as Decision Aid for Deciding about Cardiopulmonary Resuscitation
    4. Consult other allied health professional, such a social worker, ethics, spiritual care, or nursing, to provide the patient and family with ongoing support

    If the patient is emotionally distressed by the nature of the conversation, acknowledge that emotion and difficulty and say something like,

    "I can see this conversation is tough for you. Can you tell me what is making it difficult?"

    And then, after exploring this, gain permission to return to some of the tough parts of the discussion or negotiate to bring it up again

  • Use communication practices other than words that convey empathy and sensitivity, such as eye contact, sitting or bending down to be at the patient's level, touch, pauses, and silence- that encourages the patient to talk and respond.

 

Approach to Disclosing Prognosis

  • Normalize the uncertainty of prognosis; that we will never know with certainty what will happen to given individuals.
    • "I understand that you want more accurate information about the future. The reality is we can never be certain about the future. I wish I could be more certain but I will give you the best information I have."
  • Address patients' and families' emotions about uncertainty, acknowledging how difficult it may be for them not to know.
    • "It is tough not knowing what the future is going to bring."
  • Help patients and families manage the effect of uncertainty on their ability to live in the here and now.
    • "What can we do for you now, given we are uncertain about what the future will bring?"
  • Use evidence-based tools/studies to estimate future quality and quantity of life
    • For example, if you are being asked to provide statements about "how long do I have to live", consider going to ePrognosis (http:// eprognosis.ucsf.edu/) or some other evidence-based source to determine best estimates given the patient's disease or underlying condition. If asked about the chance of different outcomes associated with certain treatments, such as the probability of full recovery for in hospital cardiac arrest with CPR, use robust outcome data or validated clinical prediction rules. If there are no good data to support your prognostic declaration and you are relying on your clinical judgement, say so. In any case, consider providing estimates of outcomes in ways that continue to express ˜uncertainty.' Some patients may prefer precision that comes from a quantitative representation of data such as:

      "If there were 100 people with an illness just like yours, 50 of them or half would not be alive in 6 months."

  • For illnesses with higher levels of uncertainty, like COPD or CHF, consider something like
    • "Some may live for years, some may only live for weeks but half will have died by 6 months. Of those who are alive, many would not be as healthy as you are now. It is hard to say for sure what will happen to you. We like to hope for the best and plan for the worst."
  • For illness where there is more certainty of prognosis but less time for the patient, like with many advanced Stage IV cancers, consider saying:
    • "I am sorry. Given your situation, you likely have only {weeks to months} or {months to a year or so} to live"

      OR

      "I expect a {low, moderate, or high} chance of success with the [proposed treatment]."

TIPS

  • You will have to adapt the nature (quantitative vs. qualitative; superficial vs detailed) of this discussion around prognosis to the person you are talking, based on their emotional response to the conversation and the answers to prior question and paying attention to the sophistication of their language/vocabulary
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