Improving End-of-Life Family Meetings Part 3

(Following is the final part of a series by Dr. David Gruenewald, medical director of the Palliative Care & Hospice Service at VA Puget Sound Health Care System and associate director of the Palliative Medicine Fellowship and associate professor of medicine in the Division of Gerontology and Geriatric Medicine at the University of Washington. Dr. Gruenewald provides additional advice to families and patients at the end of this final installment – Jay Niver, editor)

Exploring Goals of Care and Treatment Options

As discussed in Part 2, the SPIKES framework is useful to explore the family’s understanding of their loved one’s illness and to share information about medical condition and prognosis. When the purpose of a family meeting is to discuss goals of care, it may be useful to “unpack” care goals using the REMAP framework.

R – Reframe: “Things are in a different place now.”
E – Expect Emotion: “It’s normal to feel sad at a time like this.”
M – Map out patient values: “Given her condition, what would your mom say is most important now?”
A – Align with values: “I’m hearing you say she would not want intensive care if she couldn’t get back home again.”
P – Propose a Plan: “Given everything we know about her, I propose that we do everything we can to keep her comfortable, but that we stop the treatments that are keeping her in the intensive care unit. What do you think?”

Before meeting to discuss care goals, it is important to have performed the initial steps in the SPIKES protocol, ensuring that patients and families understand the medical condition and prognosis, and that they have had time to adjust to this news if possible. They should be informed of the purpose of the meeting, to understand the patient’s priorities and ensure the care aligns with those priorities.

In Reframe, the clinician confirms a shared understanding of the medical condition and prognosis. This is followed by a big picture “headline,” which is often the serious news that further intensive medical treatments are unlikely to accomplish the patient’s goals.

“Would it be okay to step back and talk about the big picture?” “We’ve been using intensive care for two weeks, and I wonder if it’s time to think about where we are now. I worry that our treatments are doing more harm than good.”

This should be followed by actively attending to the family and patient’s emotional response (Expect Emotion, Part 2 of this series). Statements that name or normalize emotion may help patients and families feel heard and understood: “I wish I had better news … I can’t imagine how hard this is.”

They may ask questions that appear to be requests for factual information, such as, “Isn’t there something else you can try?” Questions asked immediately after the reframe step are often expressions of emotion, so it is best to respond with empathy: “I know this is hard to hear.” Then, if the patient or family persists in wanting information, a factual reply can be given.

Responding to emotion, repeatedly if necessary, may allow the emotional intensity to dissipate enough that the conversation can continue. The clinician may ask permission to transition to the next step: “Would it be okay to talk about where we go from here?” However, if emotional cues continue, it may be best to continue the REMAP process at another time.

Before discussing care plans directly, Mapping helps ground further discussions in the patient’s values. “As we think about the next steps, first I’d like to talk about what is most important to your sister, given where things are at now.” This is the time to explore what matters most to the patient, and what her concerns would be for the future.

This crucial exploration of values may take time to explore. Asking for clarification, what else matters, what the patient wants to avoid, and exploring conflicting priorities helps ensure understanding of what is important. “I hear he wants to live to see his grandson graduate, but he didn’t want to be kept alive on machines. If we can’t achieve both of those goals, which would be most important to him?”

In Aligning, clinicians reflect back what they have heard is most important, including areas of ambivalence, and summarize their understanding of values and priorities. They should continue to clarify and map what is important until the clinician’s synthesis is validated by the patient or surrogate decision-maker.

If the patient or family does not ask about the care plan, clinicians should ask permission to Propose a Plan: “Would it be okay if I give a recommendation?” If patient and family are ready for this step, clinicians should propose a plan with the best likelihood of furthering the patient’s goals, while also being feasible. The plan should be explicitly linked to the patient’s values: “Given what you’ve told me about the importance of being home with family, I recommend [___treatment]. What do you think?”

Sometimes the patient’s goals are difficult to achieve or unlikely to be realized. It may be useful to talk about alternatives: “We’re going to do a trial of all intensive treatments for the next week to see if she will get better. Would it be okay to talk about Plan B in case things don’t go as well as we hope?”

Concluding the meeting

Asking whether there are questions helps to ensure all participants share a common understanding of the plan. A follow-up plan should be summarized, including a time for the next family meeting.

For families and patients: How to get the most out of a meeting with caregivers

• Come prepared with written questions for your care team. Ideally, give them the list in advance.
• If you don’t understand what is being said, ask for clarification.
• Bring a scribe to keep a record.
• Encourage all family members to participate. Allow everyone to speak without interruption.
• Speak about your own concerns and perceptions using “I” messages: “I’m concerned about …” or “I want …”
• Consider using WISH to help you effectively express your concerns: What are you feeling? I’m feeling … Speak in short statements. Ask for Help.
• If the care team doesn’t do so, summarize your understanding of the patient’s condition and next steps to be taken at the meeting’s end.
• Advocate for your loved one – but remember that the team wants the best for them, too.

DISCLAIMER

This work was supported in part by the Department of Veterans Affairs. The views expressed herein are those of the author and do not necessarily reflect the views of the Department of Veterans Affairs or the U.S. Government.