The Family Meeting: End-of-Life Goal Setting and Future Planning #227 *

Background

End-of-life goal setting is a key palliative care skill, typically occurring as part of a family meeting (see Fast Facts #16, 65, 222–226). This Fast Fact discusses an approach to goal setting when the expected length of life is short.

Establishing Patient-Centered Goals

Here is an example of how to start the conversation (the patient should be given sufficient time to respond to each of these questions):

I/we have discussed your current condition and that time may be short. With that in mind—

What are you hoping for now?

Common responses invoke family, home, and comfort; often surviving until a specific future family event/date or visit with a key family member is described as an important goal. Re-state your understanding: “What I hear you saying is that you want to be home, comfortable, and survive until your daughter gives birth—you hope to meet your next grandchild.” Note: if you believe the patient's goal of survival to a specific event/date is not practical, it is important to say so and discuss alternative plans.

Recommend a Care Plan Based on the Goals

Once the goal(s) is/are established, you can then review the patient's current treatments (e.g., antibiotics, chemotherapy), monitoring (e.g., pulse oximetry), planned tests (e.g., colonoscopy), and medications (e.g., antihypertensives), and decide which will help meet, or not, the patient's goals. Anything that will not help meet the goals should be discussed for potential discontinuation. Depending on the specific disease/patient condition, other issues that are naturally discussed at this point include:

Future hospitalizations, ICU admissions, laboratory and radiology tests.

Note: There is no need to ask about each option as a yes/no question (“Do you want blood products?”). Based on what you know about the patient's goals, make a recommendation about what should and should not be done in light of the patient's goals, condition and prognosis. If you are unsure, you can explore the issue with the patient/family (“Given that your dad wanted to get home as soon as possible and yet he was also willing to do easy things that might help him live longer, I am unsure whether it makes sense to stay in the hospital an extra day or two to finish the antibiotics. What do you think he would say?”).

“Long-Shot” Goals

If patients are going to pursue “long-shot” or experimental therapy, perhaps even against the recommendation of the treating team, it is useful to ensure the following:

Reinforce the team's respect for the decision, and desire to make sure the treatment has the best possible chance of working.

Close the Meeting

Following this discussion, restate your understanding of the patient's goals and agreed-upon next steps to meet those goals, invite and answer questions, and close the meeting.

Discussion and Documentation

Discuss the goals with key staff not in attendance (e.g., consulting physicians, patient's nurse, discharge planner, primary care provider). Document the goals, preferably using a templated family meeting note (see reference 1): who was present, what was discussed (e.g., treatment options, prognosis), what was decided, next steps.

Debriefing

A useful step after every family meeting is to debrief the process – what went well, what could have been improved and, most importantly, addressing the emotional reaction and needs of the care team.