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Palliative Care - Discussing Goals of Care and Prognosis - Fast Facts | NEJM Resident 360
Understanding a patient’s goals as they face a serious illness is a crucial step in providing quality care. As the disease progresses, it is important to clarify the patient and family’s understanding of the illness, their hopes and worries about the future, and their understanding of the prognosis, as these elements should impact treatment decisions and recommendations. In this section, we review approaches to:
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Discussing Goals of Care
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Discussing Prognosis
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Discussing Code Status
The content in this section is drawn from VITALtalk and the references listed in Reviews and Additional Resources.
Discussing Goals of Care
A patient’s care goals should be discussed and revisited throughout the course of a serious illness. Conversations early in the course of the illness may elicit the patient’s understanding of the illness and prognosis and explore the patient’s hopes and worries about the future, as the disease eventually worsens. Such discussions may be referred to as “early-goals-of-care conversations.” As a serious illness progresses, patients typically face diminished responses to treatments, new disease-related complications, and decreasing levels of function and independence, all of which require care goals to be revisited. “Late-goals-of-care conversations” occur in the context of such disease progression, as the patient and clinician face decisions about next steps in care.
Key steps in discussing goals of care:
- Elicit illness understanding.
- Respond to emotion.
- Explore values.
- Provide recommendations.
**1.**Elicit illness understanding.
This initial step ensures that everyone involved in the conversation has a shared and accurate understanding of the illness. If there are gaps in the patient’s understanding of the medical situation, the clinician can provide additional information. This often involves delivering news regarding disease progression or diminished treatment options.
“ASK – TELL – ASK”
This communication model helps elicit the patient’s understanding of the illness.
- ASK the patient and family what they already know.
Example:
What is your understanding about where we are with your illness?
I want to be sure we’ve been communicating clearly. What have you already heard?
- TELL the patient and family key missing information in a clear, succinct, jargon-free way. Ask for permission to provide an update. Be prepared to respond to emotion (see below).
Example:
Asking for permission:
May I share with you my impression of where we are with your illness?
Delivering news:
I’m worried that, despite the chemotherapy you’ve been receiving, the cancer is growing.
Despite treatments in the ICU, your father’s condition has unfortunately continued to worsen. I’m worried he won’t be able to come off the breathing machine.
- ASK for permission to talk about what to do next, especially if in a “late-goals-of-care conversation” and decisions need to be made soon. Be sure to acknowledge that the illness has changed.
Example:
I think we are in a different place now with your illness.
I wonder if we could talk about where we go from here?
**2.**Respond to emotion.
When patients and families hear difficult news, it is expected that they will become emotional. An emotional response is a data point for the clinician indicating that the patient and family heard and understood the news that was delivered (i.e., you did your job). The clinician should respond empathically to the patient and family’s emotion throughout a goals-of-care conversation.
Why is it important to respond to emotion?
Demonstrating empathy is a crucial step in any goals-of-care conversation. When patients or family members become emotional, empathic statements can help them feel heard, understood, and supported within the illness experience. Becoming emotional also overwhelms one’s cognition, making it difficult to take in and process new information. An emotional patient or loved one, distressed after hearing news about the disease worsening, may have a hard time talking with the clinician about what to do next. When the clinician responds empathically to the patient’s distress, it can decrease the “emotional temperature” in the room, allowing the patient and family to partner with the clinician to discuss next steps in care.
How can I respond empathically to patient and family emotion?
A combination of silence and empathic statements is often the most effective way to respond to patient and family emotion. The NURSE mnemonic offers five ways to respond:
NURSE: Statements for Responding to Emotion
| Statement Type | Description | Examples |
|---|---|---|
| Name | Name the emotion you see in the patient. | This seems very overwhelming. |
| This must be upsetting to hear. | ||
| Understand | Recognize the intensity of what the patient is experiencing. | I can only imagine how difficult this must be. |
| Respect | Acknowledge the patient and family’s role in the illness experience. | I can see how hard you’ve been working to support your family while dealing with this illness. |
| Support | Commit to nonabandonment. | We are going to be with you as we figure out next steps. |
| Explore | Ask more about what the patient is feeling. | Could you tell me more about that? |
(Adapted from Approaching Difficult Communication Tasks in Oncology. CA Cancer J Clin 2009.)
**3.**Explore values.
Once the patient and family have a good understanding of the illness and are emotionally ready to discuss next steps, it is helpful to spend time exploring values. This involves pausing before discussing specific treatment options to explore the patient’s hopes and worries about the future, given the state of the illness. The hopes and concerns that the patient and family share will become important information that will help guide the treatment plan.
Questions to explore values:
Given where we are with this illness, is there anything you’re hoping for?
Given where we are with this illness, what worries you?
As you think about the weeks and months ahead, are there goals you have?
As you think about the future, what concerns do you have?
[After hearing a few hopes and/or worries] What else? Are there other things that you feel are important?
**4.**Provide recommendations.
Once the clinician has a strong sense of the patient’s values, recommendations should be provided that reflect both the medical reality of the clinical situation and the values that the patient expressed. The physician should be explicit about how the recommendations help address the hopes and concerns raised by the patient.
Examples of providing recommendations:
Given what you’ve told me about your goals to be at home, spend time with your kids, and not be in pain, I’d recommend we talk about some home services that will help us achieve these goals for you.
Based on what you’ve told me about your dad, it sounds like he would do anything for the sake of more time. Given this, I’d recommend we try another 48 hours on the breathing machine to see if he might improve. If he gets better, wonderful. If he’s still struggling, we can talk more about how we might continue to care for him, even if he can’t recover.
In both examples, the physician links the recommendation to the values the patient or family expressed. Providing recommendations also avoids burdening patients and family members with decision-making regarding medical treatments that can be difficult to weigh. Instead of giving a “menu of options” of medical treatments, the aim is to guide patients and families toward therapies that are consistent with their values and with the medical reality of the situation.
Discussing Prognosis
Discussing prognosis is a form of delivering serious news. The general principles of asking first what the patient and family already understand, sharing information succinctly and clearly, and responding to emotion remain essential. Additionally, the clinician should clarify what type of prognostic information would be most helpful to the patient.
Key steps in discussing prognosis:
1. Ask the patient and family what they already know.
Examples:
What is your understanding about where we are with your illness?
Have you talked about prognosis with other doctors already? What sense have they given you?
**2.**Clarify what type of prognostic information would be helpful.
When discussing prognosis, not all patients will want to know about time specifically. Some patients may wonder about how the disease will change their level of functioning over the coming weeks and months. Others may wonder if they are likely to live long enough to attend a family event or experience a life milestone. Thus, it is best to clarify what information is desired.
Example:
Some patients wonder how much time they have left to live. Others wonder about living to a specific date or event, or about how they are likely to feel over the weeks and months ahead. I wonder what information would be helpful for you?
**3.**Ask for permission to share prognostic information.
Some patients will be ready to hear prognostic information, but others will be ambivalent or seem overwhelmed by the conversation. It is best to acknowledge that hearing this information can be difficult and ask for permission to proceed.
Examples:
Does this feel like an OK time to share my impression with you?
I recognize prognosis can be difficult to talk about. Does this feel like the right time?
Are there others we should invite to be part of this conversation?
If the patient’s condition is declining, and he or she may need this prognostic information to make informed decisions, the physician should acknowledge that tension.
Example:
I recognize that prognosis can be very difficult to discuss. I also know that, from my experience, having this information might impact the decisions you make. Would it be OK to share my impression with you, so we can think about this together?
**4.**Deliver prognostic information clearly and succinctly.
Share the information to address what the patient wants to know.
If talking about time, it is best to speak in terms of ranges.
Example:
Given where we are with this illness, my sense is that time can be measured in weeks to a few months.
If talking about living to a specific life event, share your sense of likelihood. If you don’t think the patient is likely to live until the life event, an “I worry” statement can be helpful.
Example:
It sounds like you’re hoping to see your granddaughter’s graduation next year. I hope for that too. I also worry your time may be shorter than that.
**5.**Respond to emotion.
As with any serious news, hearing prognostic information often evokes emotion. The physician should respond empathically, employing NURSE statements, as described above.
Discussing Code Status
Key elements of discussing code status:
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Discussion of code status should follow discussion of the patient’s illness understanding, prognosis, and care goals. If the patient lacks an accurate understanding of the illness or prognosis, or if the physician lacks understanding of the patient’s values, then the skills discussed above should be employed first.
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Cardiopulmonary resuscitation (CPR) should be approached by the physician as an intervention. As with any procedure, risks, benefits, and most likely outcomes should be considered. Blinderman and colleagues suggest the following three approaches for considering CPR, based on an accurate assessment of potential benefits and harms:
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Consider CPR as a plausible option when the balance of benefits and harms is favorable or uncertain; this is most often the case in patients who do not have end-stage disease.
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Recommend against CPR when the likelihood of benefit is low and the likelihood of harm is high; this is most often the case in patients who have end-stage disease (cancer, dementia, and others).
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Do not offer CPR when patients are imminently dying or have minimal likelihood of benefit; this approach should be disclosed to the patient and surrogates as an attempt to protect the patient from unnecessary harm and instead prioritize comfort.
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CPR should be discussed with patients and surrogates using recommendation language informed by the patient’s current medical condition, prognosis, and values. Speak first about what you will do for the patient and speak second about therapies (including CPR) that you do not recommend at this point.
Example:
Based on what you’ve told me, I’d recommend we talk about home services that might allow you to have more good time there, as you’re hoping for. I also think we should have you come back to the hospital for fixable things like an infection. At the same time, given where we are with this cancer, if you were to get sicker, I don’t recommend we put in a breathing tube or perform CPR. I worry those measures won’t help you get back to the things you enjoy and would instead cause you to struggle.
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The physician should clarify, when necessary, that a decision not to attempt CPR refers only to resuscitative efforts and that other therapies that are deemed consistent with the patient’s goals and values will be continued.
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The physician should acknowledge and respond empathically to patient emotion throughout the discussion of code status (see NURSE statements, described above).