Goals of care documentation

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Engaging patients in meaningful goals-of-care discussions is critical to providing patient-centered, individualized care. High quality care can only be achieved when a patient’s care is aligned with their goals, preferences, and values.

A JAMA Internal Medicine review concluded that best practices for a goals-of-care conversation include: “sharing prognostic information, eliciting decision-making preferences, understanding fears and goals, exploring views on trade-offs and impaired function, and wishes for family involvement.”

While many clinicians find these conversations daunting, there are steps they can take to improve their skillsand comfort level. In this third part of our Goals-of-Care Conversation series, you’ll learn a step-by-step approach and tips, based on best practices, that you can use to guide these important discussions with your patients.

A Goals-of-Care Conversation in 8 Steps

Here are eight key components of a goals-of-care conversation with examples of questions and empathic responses or prompts clinicians can use to guide the goals-of-care discussion.

Assess knowledge and understanding of illness and/or prognosis

• Has anyone spoken to you about what to expect from your disease and the kinds of treatments you would or would not want if/when you get really sick?
• What conversations have you had with other doctors and your family about the care you want to receive?
• What have you been told about your medical situation so far?
• What is your understanding of what lies ahead with your illness and your treatment?
• Where are you with your overall health right now?
• To make sure we are on the same page, can you tell me your understanding of your illness?
• How have you and your family been managing your illness so far?
• I can see how dealing with this may be difficult for you.

Assess willingness to receive information and preferred role in decision making

• What information do you need right now?
• What, if any, information about what lies ahead would you like me to share with you?
• Would you like to discuss what the [test, lab, scan findings] mean?
• Sometimes people with a serious or life-limiting illness think about how long they might have. Is that something you think about?
• How much do you want to know about your condition?
• Do you want to make your own decisions about your care or do you prefer someone else to make those decisions?
• Is there anyone you rely on to help you make important decisions?

Inform patient, based on responses in step 2, of prognosis and anticipated outcomes for current treatment and assess for understanding

• In order to plan for the future, I think it is important to talk about what the expected course of your condition may be.
• 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.
• I want to share with you my understanding of where things are with your illness.
• I wish we were not in this situation, but I am worried that time may be as short as [estimated prognosis].
• We cannot 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 [estimated prognosis]. It could be longer or shorter, though.
• It’s natural that talking about this can be upsetting —for any of us. It’s okay to take some time.

Explore fears and worries and elicit values, hopes, goals, and priorities

• What are your hopes or personal goals as the illness progresses?
• What are your most important goals if your health condition worsens?
• When you think about the future, what do you worry about?
• Given the severity of your illness, what is most important for you to achieve?
• Given this situation, what’s most important for you?
• Tell me more about what [not giving up, fighting, a miracle, etc.] might look like for you.
• As I listen to you, it sounds like the most important things are…

Discuss health states the patient would find unacceptable

• What makes life worth living for you?
• Help me understand more about …
• 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?
• Are there any circumstances under which life would not be worth living?
• Have you thought about states of being that would be so unacceptable to you that you would consider them to be worse than death?
• Given what you’ve told me and what I know about your illness, it sounds like [summarize overall goal(s) regarding medical care] is important to you now. Am I understanding your goals of care correctly?

Discuss treatments and interventions that align with identified goals and values

• Can we talk about what we should do if things don’t go as well as we hope?
• We want to help you with your goals. There are different things that we can do to help you feel better.
• Let’s talk about the options and figure out which ones will help you meet your goals.

Summarize, make a recommendation, and affirm commitment to care

• Based on what you’ve said, it seems like the most reasonable course of action is [propose recommended option].
• How does this plan seem to you?
• I wish we had a treatment that would make your illness go away.
• Given what you have told me about yourself and what I know of your medical condition, I do not think that [treatments not recommended] are right for you because of the following reasons…
• The team is here to support you and your family.
• I will do everything I can to help you through this.

Document the conversation in medical record

• Mr. Jones and I had a 20 minute discussion about his prognosis and goals of care.
• During this discussion, Mrs. Jones was present. She can be reached at …
• During the discussion, Mr. Jones explained that he wanted to be able to live long enough to attend …

11 Tips for a Patient-Centered Goals-of-Care Discussion

To ensure an effective, patient-centered conversation, follow these eleven tips:

• Prepare ahead of time for the conversation
• Establish rapport and ask permission to begin the conversation
• Use good communication skills to convey empathy and encourage engagement
• Employ shared decision making
• Incorporate high-quality, evidence-based patient decision aids, where appropriate
• Take the patient’s health literacy into consideration
• Use plain language
• Confirm patient’s concerns and values by restating them as understood
• Use the Ask-Tell-Ask technique when discussing a poor prognosis
• Allow for and manage emotions before moving forward with the conversation
• Revisit the discussion regularly, especially if the patient’s health status changes

Clinicians working with seriously ill patients need to effectively initiate and guide goals-of-care conversations and be able to transition to topics around end-of-life care and advance care planning. Advance care planning and goals-of-care conversations both involve exploring what is most important to a patient and making sure their values and preferences for healthcare are known. The distinction is that the objective for advance care planning is to plan for care in the event the patient is not able to make their own medical decisions while the objective for goals-of-care discussions is to prepare for current medical decision-making.

ACP Decisions offers a four-part video series that guides clinicians through the determination of goals-of-care and the advance care planning process with patients, from introducing the concept to translating the conversation into an actionable plan. Learn how to access it here!

If your health care organization would like to have access to our advance care planning resources and video library, contact us today!

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