Conversation Script: Goals of Care

Clinicians often face talking to patients with serious illness about changes in status and how those changes inform the patient’s goals of care. In some cases, the clinician will have a longstanding relationship with the patient, while others may be talking for the first time. This communication script will highlight skills and techniques that will help foster meaningful conversations regardless of the existing relationship.

To ensure the development of a medical plan concordant with both the clinical realities AND a patient's values/goals, we suggest a cognitive map, a sequence of steps for these conversations. Following VitalTalk’s REMAP guide, you can share (or reinforce) updated clinical information to establish context for the conversation and make sure everyone is on the same page. Then, in light of this information, explore (with curiosity) what is the patient hoping for or worried about? Lastly, suggest a plan that acknowledges these priorities. "Interstitial skills" such as responding to emotions with empathy and asking permission to move forward allow you to individuate—to see the unique person in front of you, thereby promoting a partnership with them and potentially mitigating or avoiding the negative impacts of implicit bias.

• Reframe the situation.
• Expect emotion and empathize.
• Map what’s most important.
• Align with the patient’s values.
• Plan medical treatments that match patient values.

Sam is a clinician who is about to talk to a patient about a change in their medical status and what that will mean to the patient, Mr. J, regarding future decisions and goals of care.

Mr. J is a 75-year-old man with COPD. He had a recent hospitalization with an exacerbation of COPD that required ventilator support and rehabilitation. He goes to his doctors’ appointments and has been adherent to treatment. Mr. J has been hospitalized 4 times in the last 12 months and this appointment is a post hospitalization follow-up.

Clinician: Hello Mr. J, I am happy to see you today.
Mr. J: Thank you, nice to see you too.

Clinician: I see you’ve been in the hospital again, and it looks like it was serious.
Mr. J (tearful): Yep, my family tells me it looked bad there for a while and they were scared they were going to lose me.

Clinician: That had to be difficult for everyone...(Pause) Can you tell me more about what happened? [Skill: Responding to emotion with empathy]
Mr. J: Well, I woke up and couldn’t breathe. We tried the inhalers and turned up my oxygen, but my wife called 911 again when I fell trying to get out of bed. They came and they took me to the hospital. I ended up on a breathing machine, and according to my family they were told I might not make it.

Clinician: That sounds terrifying. It seems like you were very sick. (Pause) What did they tell you and your family about the status of your disease now?
Mr. J (choking up): They told me that my COPD is worse and that I should talk to my family about what I want for the future because it will continue to get worse.

Clinician: I imagine that was hard to hear. (Pause) [Skill: Responding to emotion with empathy]
Mr. J: It was. For me and my family! Do you think that’s right, that’s where I am now?

Clinician: You have been doing your best to take care of yourself and you and your lung doctor have worked hard on your treatment plan. (Pause) Would it be ok with you if I shared my impressions of what is going on with your health? [Skill: Asking permission to share information]
Mr. J: Yes, please.

Clinician: I agree with what you have been told that your COPD is getting worse. From my experience with other patients in similar circumstances, I worry that your breathing will continue to get worse, and this is likely to be the best that you will feel moving forward. (Pause) [Skill: Reframing the situation]
Mr. J: Unfortunately, that’s what I’m beginning to understand.

Clinician: That’s clearly difficult news to absorb. (Pause) [Skill: Responding to emotion with empathy]
Mr. J: Yes, it is…

Clinician: (After allowing some silence) Given this understanding of where things are right now, it might be a good time to do some thinking about what is important to you so that we can make sure that we provide you with the care that you want - would that be ok to talk about now? [Skill: Partnering language] [Skill: Asking permission to move the conversation forward]
Mr. J (tearing up): Sure, but I am scared.

Clinician: That makes sense, this can be really scary. (Pause) Tell me more about that—what are you worried about? [Skill: Explore emotion to understand what the patient is feeling] [Skill: Map what’s most important]
Mr. J: When I can’t breathe my wife looks terrified, that bothers me more than not being able to breathe. My wife lost her sister recently and she was so heartbroken, and I see that same look in her eyes when she sees me struggling to breathe.

Clinician: I can see that you love your family very much, and even in the midst of your own illness you are concerned about how this is all impacting them. [Skill: Responding to emotion with empathy]

I also hear you saying that having your symptoms well controlled is also really important to you. [Skill: Aligning with values]
Mr. J: Yes, definitely.

Clinician: When you think about the future, what’s most important for you? [Skill: map what’s most important]
Mr. J: Well, I would like to spend my time with my wife doing the things we have always enjoyed- Dinners, movies, seeing the kids and grandkids.

Clinician: So sounds like you want to be as active as possible and to have more time doing things with your family. (Pause) [Skill: Aligning with values] What else might be important to you?
Mr. J: Well I’m not ready to go yet. My oldest grandchild is getting married this summer. I want to be there, and to feel as good as I can when it comes around.

Clinician: So what I hear you saying is that you want more time, as you have some family events you are looking forward to. And again, you also want to make sure your symptoms are as well controlled as possible. [Skill: Aligning with values]
Mr. J: That's right.

Clinician: I know you just had a difficult hospitalization including being on a ventilator. Given that you survived that, and I’m hearing that you want more time, what are your current thoughts about having to go through those sorts of treatments again in the future? How much do you think you are willing to go through for the purpose of having more time? [Skill: Map what’s most important]
Mr. J: Wow. That's tough. I mean, I survived. But it was also really hard for my family. I have to think about that some more. But right now, if the doctors thought they could turn me around and that I would get better, I guess I would want them to try. Like I said, I’m not ready to go yet so I guess I’d want my doctors to do everything.

But I also don’t want to end up stuck on a machine in the hospital like a vegetable or in a nursing home away from my family.…

Clinician: These are difficult things to talk about, and you really are doing an amazing job thinking through this with me. [Skill: Responding to emotion with empathy]

So what I think I hear you saying is that if you got very sick again, you would want a trial of going to the ICU if needed, but that if it ever gets to the point where the doctors don’t think you are going to be able to come off the machine, you wouldn’t want that [Skill: Aligning with values]
Mr. J: Yes, that sounds right. I mean I’m really thankful that they were able to turn me around this time, even though it was hard.

Clinician: So, you have told me a lot. You really want to make sure that your family is supported, that your symptoms are managed as well as possible and that you can have more time to enjoy with your family. You really want to get to that wedding, so are also willing to go through some intensive interventions, if it means you might get more time out of the hospital. [Skill: Aligning with values]
Mr. J: Yes, I think that makes sense.

Clinician: Based on all that you have shared with me, would it be ok if I made a recommendation? [Skill: Asking permission]
Mr. J: Of course, I really value your opinion.

Clinician: Well, first, to make sure that your symptoms are well controlled and that we are doing our best to keep you active and working on getting to the wedding this summer, I am going to suggest that we set you up with a palliative care clinic visit. They are experts in symptom management and might have some other suggestions. They could also be a source of support for your wife and family.

In addition, because you have shared that you are willing to go through a trial of intubation again if needed, but not be “stuck on machines” as you said, we can spell that out in your medical record, so that other health care teams can see what you have shared today. [Skill: Plan medical treatments that match patient values]

Like this clinician, it is important to get permission before you make a recommendation.

It is then important to explain explicitly how your recommendation includes the values the patient explained, using their exact language.

If you are successful, you will be able to walk with your patient through a change in health status and use this as a trigger to reengage the patient in a meaningful goals of care conversation.