Table 2.

Sample language for serious illness conversations under several health scenarios and triggers

ComponentScenario
PredialysisDialysis Initiation or Follow-UpPosthospitalization or Functional DeclineAfter Access Failure/Access ProcedureWithdrawal Consideration
SetupAs we start to think about dialysis options and preparations, it’s a good time to discuss your goals and preferencesAs you begin dialysis or settle in to the routine, it’s a good time to discuss your goals and preferences. It’s been 3 mo since you started dialysis, which is a good time to discuss how things are going and review your goals and preferencesYou just went through quite an ordeal. I’ve noticed that things have been getting more difficult for you. In light of that, this may be a good time to discuss what is most important to you if you are getting sickerYou just had some setbacks with your dialysis access/had your dialysis access fixed, so if it’s ok with you, I’d like to discuss your goals and preferencesI understand you have been thinking about whether you want to continue dialysis. Is it ok for us to discuss your goals and preferences, so we can think about that together?
Understanding/effectHow much do you know about your kidney disease and what it means for your health and quality of life?How has starting dialysis or being on dialysis affected your life? What is your understanding of what lies ahead with your dialysis and overall health?How did this hospitalization change your understanding of the future with your health? How have things changed for you recently? What is your understanding of what lies ahead?What is your understanding of what lies ahead with your dialysis and overall health?What is your understanding of what it means to stop dialysis?
Information preferencesWhat, if any, information about what lies ahead would you like me to share?Sometimes, patients on dialysis are thinking about how long they might have. Is that something you are thinking about? What, if any, information about what lies ahead would you like me to share?What, if any, information about what lies ahead would you like me to share?What, if any, information about what lies ahead would you like me to share?What, if any, information about what lies ahead would you like me to share?
Sharing of prognosisTime-based: We can’t fully predict what is ahead, and there is a good amount of uncertainty, but based on your health status and the best available information, I would say about several months to a year/a year or two/a handful of years. It could be longer or shorter though. Functional: I wish I could tell you that you will get better, but I think we may need to prepare for the real possibility that how you have been feeling may be as good as it will get. It’s also possible that more hospitalizations and need for procedures may worsen your quality of life. Uncertain: We can’t really predict what is ahead, and I hope dialysis continues to go as well as possible, but I worry that, with kidney disease and dialysis, your health can decline suddenly. I want to make sure we are prepared for that situation and that I have the information needed to provide you the care you want if that happens
Goals (health related or personal; milestones; events)What goals do you have either for your health or yourself? What do you hope being on dialysis will allow you to accomplish?What are your hopes about what life will be like on dialysis? What do you hope being on dialysis will allow you to accomplish?Now that you have been through this hospitalization, are you thinking at all differently about your future with your health? What do you hope being on dialysis will allow you to accomplish?With your access procedures, you are clearly willing to go through quite a bit to make dialysis work. What do you hope being on dialysis will allow you to accomplish?What are your most important goals if you stop dialysis and are approaching the end of your life?
FearsIs there anything about your kidney disease that worries you?Is there anything about dialysis that has you worried?Has your recent hospitalization raised any concerns or worries about your health or your future? What are your fears and worries about what is ahead with your illness?What are your fears and worries about what is ahead with your illness? Anything else?What are your fears and worries as you consider stopping dialysis?
Sources of strengthWhat gives you strength as you think about the future with your illness? What roles, if any, do friends or family play in giving you strength? How about your faith?
FunctionWhat functions or activities are so important to you that you cannot imagine being without them?How is dialysis affecting the functions and activities that are most important to you?Considering how things have changed, what functions or activities are most important to you?What functions or activities are so important to you that you cannot imagine being without them?What functions are most important for you to hold onto as we care for you after stopping dialysis?
TradeoffsWhat are you willing to go through to achieve your goals or maintain those functions?Does dialysis feel like something that you can do to allow you to achieve your goals or maintain those functions? What else are you willing to go through to achieve your goals or maintain those functions?What are you willing to go through to achieve your goals or maintain those functions?How do you feel about needing procedures to keep dialysis going? What else are you willing to go through to make dialysis work or achieve your goals?If you stop dialysis, what are your priorities for your comfort and wellbeing and in relation to your family?
FamilyHave you discussed your goals and worries with your family?Have you shared your concerns and feelings about dialysis or discussed how it is going with your family?How much have you shared with your family about your thinking about the future since having these recent health issues?How much have you shared with your family about your thinking about the future since having these recent setbacks?Have you discussed your thoughts about stopping dialysis with your family?