(Following is the second of a three-part 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. – Jay Niver, editor)
Structuring a Family Meeting to Discuss Serious News
Just as for any medical procedure, conducting a meeting with families of seriously ill patients requires training and practice. Practitioners must develop skills in structuring serious-illness conversations and responding with empathy in emotionally fraught situations.
Patients and families may cope better when they are able to disclose their concerns fully, but eliciting these concerns may require considerable clinician skill. Clinicians must detect and respond to indirect emotional (and informational) cues. Emotional cues may be allusions (“I was really hoping to see my son graduate”), paraverbal (e.g., auditory pitch and tone), or nonverbal (e.g., facial expression, posture).
Practitioners often fail to respond to such cues with empathy and may avoid the emotion or change the subject. This can negatively affect the patient-clinician relationship and damage further communications. By contrast, responding empathically to cues may improve adherence to treatment plans, increase patient satisfaction, and improve disclosure of concerns in the future.
Several frameworks have been developed to guide serious-illness conversations. These frameworks are intended to be flexible; steps may not occur in the specified order, and not all steps are needed in every meeting. Some steps are more important than others in individual cases. Importantly, clinicians must be prepared to respond with empathy any time patients or family members present cues suggesting emotional distress.
A well-known framework for discussing serious news is the six-step SPIKES protocol, as outlined and explained below.
S = Setting; prepare for meeting
P = Perception; elicit patient/family understanding of medical situation
I = Invitation/Inquiry; how should information be shared? What is most important?
K = Knowledge; share what you Know
E = Exploring/Empathy; respond with Empathy to Emotions
S = Strategy/Summary – Next Steps
Step 1 (Setting) involves preparing for the meeting, including reviewing medical issues; determining who should attend and who will lead the discussion; setting the meeting time and location; organizing the agenda; and introducing all participants when the meeting begins. When multiple specialists and care teams are involved, a “pre-meeting huddle” is essential to ensure the entire team delivers a unified message.
In Step 2 (Perception), the team elicits family and patient perspectives and their understanding of the illness and prognosis. Families must be given at least as much time to speak as clinicians, given that the length of time the family is allowed to speak correlates with their satisfaction with these meetings. Questions such as, “I’m wondering how you’re seeing the medical situation at this point,” or “What have you been hearing from the doctors about [your mother’s] condition?” may be helpful. Their responses help not only to identify areas where more information may be needed, but also importantly to determine whether they are on the same page as the medical care team.
Step 3 (Invitation/Inquiry) has the discussion leader ask permission to share information: “Is it okay if I share the results of your scan with you now?” This is also the time to clarify how best to share information: “Would you like to know all the details about your care, or do you prefer to know just the big picture?”
It is also good to inquire about the decision-making process: “Can you tell me how you like to make decisions about your care? Some people want to decide things for themselves, but others want their family involved. What works best for you?”
In Step 3, clinicians should ask about patients as people, to learn about their values and goals, what quality of life means to them, and whether they previously stated any preferences for care. Common wishes include being independent and able to perform activities of daily living, enjoying time with family, living as long as possible, and being comfortable.
In Step 4 (Knowledge), clinicians share their assessment of the patient’s condition and prognosis. This step should focus on the “big picture” rather than a detailed recitation of medical facts. While the prognosis may be uncertain, it is often helpful to discuss best-case / worst-case, and most-likely scenarios.
When serious news is shared, it is essential to use straightforward yet compassionate language, break information into small “chunks,” avoid medical jargon and euphemisms, and use silence to allow time for information to be digested. Patients and families must process what they have heard, and clinicians should confirm that: “What questions do you have about what I’ve said?”
Step 5 (Respond with Empathy to Emotion) employs empathic listening tools such as the “NURSE” mnemonic that may help begin this processing. It is important to continue exploring emotions using questions (“What else is coming up for you?”) and invitations to continue (“Say more about that.”), engaged utterances (“oh,” “u-hum”) and attentive body language. “I wish” and “I worry” statements help to align with patient and family goals and hopes, while speaking truthfully about prognosis: “I wish that your mother will make it home, too. I worry that we don’t have treatments to make that happen.”
“I wonder” statements help pivot the conversation toward next steps and a discussion of care goals: “I wonder what your father would want if things don’t go as we hope.”
The NURSE Mnemonic
N aming: “This must be (overwhelming/scary/frustrating).”
U nderstanding: “I can see how that would be important to you.”
R especting: “I really admire your commitment to your mother.”
S upporting: “We will work hard to get you the support you need.”
E xploring: “Help me understand more about that. Tell me more.”
Only when these first 5 steps have been attended to are patients and families ready to discuss the care plan.
In Step 6, (Summarize/Strategy), clinicians recap their understanding of what is most important to the patient and the main concerns identified. Patients and families should be assessed for their readiness to move forward: “Is it OK if we discuss where to go from here?” A recommendation should then be offered based on the patient’s condition and values: “I’ve heard that (longevity, comfort, function, etc.) is very important to him. Bearing that in mind, and based on [the patient’s current condition], I recommend [___treatment]. That will help ensure that our care is in line with what is important to him. How does that sound to you?”
When the purpose of a family meeting is to discuss goals of care, it is often necessary to take a step back from strategy development (Step 6) and break down the care-planning process into a series of smaller steps. This will be discussed in Part 3 of this series.
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.
“People who have substantive discussions…about their end of life preferences were far more likely to die at peace and in control of their situation, and spare their family anguish.”
–Atul Gawande, MD
On December 16, 2019, my wife fell so hard, that a brain-bleed occurred which destroyed her brainstem, which reduced her to a breathing, lifeless puppet. Doctors of the Neurological Department refused to operate, since it was final. She breathed. At 4:30 PM the next day they told me that there was nothing more to do. Her sister and oldest son were around to hear this result. I, as her husband, decided to let her die. We had discussed this during her lifetime and it was according to her wishes. Now the family avoids me and cuts me off from the three granddaughters.