Introduction     It’s not uncommon for families or caregivers of seriously ill patients, upon being told by clinicians that the patient is dying or otherwise unlikely to survive, to respond along the lines of “That’s what they told us last time, but [our loved one] got better,” or “We’ve heard that before, but [our loved one] is strong and always pulls through.” This Fast Fact discusses constructive responses to these statements.

How do clinicians often respond?    It is tempting for clinicians to respond in ways that center their authority and knowledge. Clinicians may emphasize all the reasons “this time is different,” or explain to the family how they misinterpreted prior events. This is rarely helpful, and can be perceived as clinicians not listening, not acknowledging the patient’s strengths, or even “giving up”. This generates mistrust in the health care team, causes breakdowns in shared decision-making, and is a missed opportunity to build partnership and trust.

How can clinicians do better? Here are some strategies, based in expert opinion, to improve these conversations. They are not meant to be a list of actions to be completed in a particular order.

Ground yourself    This is an emotional situation – you have just told the family you think their loved one is dying. It is hard to hear a family discount your expertise by pointing out that they have heard this before, and we were wrong. It can feel demoralizing, disrespectful, and even hurtful. Don’t take their response as a personal comment on your expertise. Take a breath—this is an excellent opportunity to gain a deeper understanding of the patient and family and their experiences.

Acknowledge prior predictions were wrong; celebrate the outcome     Remember the patient did better than expected and that is good news! Appreciate that the family’s prior experience was the fulfillment of hope against the odds. “I’m glad that your dad did better than we expected.”

Get curious    What is the family trying to tell you when they say, “That’s what they told us last time”?

• Are they expressing distrust in the medical system’s ability to prognosticate?
• Are they genuinely confused as to how the current clinical scenario is different from those prior?
• Are they trying to explain that their loved one is stronger than other patients we might see, and that statistical predictions are often wrong in their case?
• Are they telling us that they are not interested in changing the current treatment plan without more clinical data and time (e.g., a time-limited trial)?

Any of these concerns might lead to “That’s what they told us last time,” We cannot address the real concern until we know what is underpinning that statement. Explore their experiences by saying “Tell me more about that,” or “Would you be willing to share a little more about what happened last time?” (1,2).

Acknowledge uncertainty The family is trying to make the best possible decisions for their loved one, and this can be incredibly stressful given prognostic uncertainty. Praise the family for persevering so they can see that you recognize how they are advocating the best they can for the patient. “You are doing the best you can to support your mother when the future is so uncertain” (3).

Deal with mistrust directly     If mistrust in the health care system is part of the issue, name the issue. “It feels like it’s really hard to trust us because we were wrong about what would happen last time.”

Explore whether this time might be different     If you feel that clarifying information about the medical situation may in fact be helpful, check yourself and ask permission to share it first. “Would it be alright if I shared a little bit about why I think this time might be different?” Asking serves three important purposes:

• It respectfully gives the family more control over the conversation and allows them to decline your offer (in which case you should not give any information).
• If they do want to hear more information, you know they may be beginning to think about how this time might be different, and they will be paying attention to what you have to say.
• It keeps you from wasting time providing information that is neither helpful nor desired.

Explore how and when we will know whether things are different this time    Is this family in a place where they are able to think about their loved one “not doing as well,” or what they would do in that situation? “I wonder if you can think about, what if, despite all the things we are trying, your wife does not do as well as we hope?” Sometimes, a time-limited trial can be useful by providing more clinical data and a set time and place for everyone to reassess how things are going together. See Fast Fact #401 (4,5).

Takeaway   The message a family sends when they say, “That’s what they told us last time, and he got better,” is that they do not believe our prognostic assessment and do not want to give up on the current plan. It is unlikely that we will be able to convince them that our view of the future is the correct one, especially if their lived experience is that we have been wrong in the past. Rather than trying to “fix” or “correct” their view, come to the conversation from a place of empathy and build a stronger relationship for future conversations. Our role switches from being an expert to being a guide, acknowledging the patient’s and family’s experience, and remaining curious while we see what the future brings.

References

1.         White DB, Ernecoff N, Buddadhumaruk P, et al. Prevalence of and factors related to discordance about prognosis between physicians and surrogate decision makers of critically ill patients. JAMA. 2016;315(19):2086. doi:10.1001/jama.2016.5351

2.         Boyd EA, Lo B, Evans LR, et al. “It’s not just what the doctor tells me:” Factors that influence surrogate decision-makers’ perceptions of prognosis: Critical Care Medicine. 2010;38(5):1270-1275. doi:10.1097/CCM.0b013e3181d8a217.

3.         Smith AK, White DB, Arnold RM. Uncertainty — The Other Side of Prognosis. N Engl J Med. 2013;368(26):2448-50. doi:10.1056/NEJMp1303295.

4.         Siropaides CH, Arnold RM. Fast Facts and Concepts #401: Time-Limited Trials for Serious Illness. Palliative Care Network of Wisconsin. Published June 2020. Accessed September 19, 2022. https://www.mypcnow.org/fast-fact/time-limited-trials-for-serious-illness/

5.         Quill T, Holloway R. Time-limited trials near the end of life. JAMA. 2011;306(13):1483-1484.

Suggested Resources & Reading

• Curtis JR, White DB. Practical guidance for evidence-based ICU family conferences. CHEST. 2008;134:835-843.
• Back A, Arnold R, Tulsky J. Talking about serious news. In: Mastering Communication with Seriously Ill Patients. Cambridge University Press; 2009:21-38.
• Back A, Arnold R, Tulsky J. Discussing Prognosis. In: Mastering Communication with Seriously Ill Patients. Cambridge University Press; 2009:49-66.
• Back A, Arnold R, Tulsky J. Conducting a family conference. In: Mastering Communication with Seriously Ill Patients. Cambridge University Press; 2009:79-92.

Disclosures: Robert Arnold MD is an author of Mastering Communication with Seriously Ill Patients, a board member of VitalTalk, and an editor for UptoDate and The American Academy of Hospice and Palliative Medicine’s PC-FACS.

Institutional Affiliations: University of Pittsburgh Medical Center, Pittsburgh, PA.

Version History:  Originally edited by Drew A Rosielle MD; first electronically published in November 2022

Fast Facts and Concepts are edited by Sean Marks MD (Medical College of Wisconsin) and associate editor Drew A Rosielle MD (University of Minnesota Medical School), with the generous support of a volunteer peer-review editorial board, and are made available online by the Palliative Care Network of Wisconsin (PCNOW); the authors of each individual Fast Fact are solely responsible for that Fast Fact’s content. The full set of Fast Facts are available at Palliative Care Network of Wisconsin with contact information, and how to reference Fast Facts.

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