Amanda W. Brown, MD, FAAP Assistant Professor of Pediatrics Supportive Care Program

1. Having Difficult Conversations: Giving Serious News and Introducing Palliative and Hospice Care to Patients and Families Amanda W. Brown, MD, FAAP Assistant Professor of Pediatrics Supportive Care Program Children’s Hospital of Pittsburgh October 5, 2018

2. Objectives • Describe the Ask-Tell-Ask framework for giving serious news • Name at least two examples of empathic statements using the NURSE mnemonic • Identify a strategy for introducing palliative and hospice care to patients and families

3. outline • Background • Giving the news: Ask-Tell-Ask • Responding to the news: Expect emotion • Talking to children about serious news • Introducing “our team”

4. Group introductions

5. Background “Be brave enough to start a conversation that matters.” -Margaret Wheatley

6. What is “Serious News”? • Serious news • “ isany information which seriously and adversely affects one’s view of the future.” (Buckman) • “results in a cognitive, behavioral, or emotional deficit that persists for some time” (Ptacek et al.) • “Serious news” vs “ bad news”: does it matter? • Examples? Buckman, “ How to break bad news: A guide for health care professionals”, 1992 Ptacek JT, Eberhardt TL. Breaking bad news: a review of the literature. JAMA. 1996

7. What we know about giving serious news • Giving serious news is hard • Parents/families don’t think we do it very well (Contro et al.) • Recipients of serious news hear less than half of what is said (Kuttner) • Physicians express discomfort having these conversations (McCabe et al.) • We can get better at it with training and practice Contro N, Larson J, Scofield S, Sourkes B, Cohen H. Family Perspectives on the Quality of Pediatric Palliative Care. Arch PediatrAdolesc Med. 2002 Kuttner, L. Talking with families when their children are dying. Medical Principles and Practice, 2007 McCabe M, Hunt E, Serwint J. Pediatric residents’ clinical and educational experiences with end-of-life care. Pediatrics, 2007;

8. Why is this so hard to do?

9. Why is this so hard to do? • Hard to know exactly what words to say (fear of saying the wrong thing) • Fear of taking away a patient or family member’s hope • Time (distractions, etc.) • Lack of formal education/training • These are often emotion-laden conversations especially in pediatrics • Prognostication can be challenging (hard to predict the future) • Others?

10. Giving the news: Ask-Tell-ASK “ The single biggest problem in communication is the illusion that it has taken place.” -George Bernard Shaw

11. REMAP: A Communication Framework • Reframe why the status quo isn’t working. • ASK- TELL- ASK • Expect emotion and empathize. • NURSE • Map the future • Align with the patient’s values. • Plan medical treatments that match patient values. Our focus today http://vitaltalk.org/guides/transitionsgoals-of-care/

12. Giving the news:ASK-TELL-ASK • ASK: • “ What have the doctors been saying about….?” • “ What do you already know about what is happening…?” • “Is now a good time to discuss….?” • “What do you want to know about….?” • “Some people like to know lots of details whereas other people want to know more about the big picture. What kind of person are you?”

13. Giving the news:ASK-tEll-ASK • TELL • Warning shot • Headlines are succinct descriptions of the big picture • Give the headline then stop!!! • Avoid jargon • If there is a lot of news to discuss, give in small pieces

14. Giving the news: ASK-tEll-ASK • Scenario #1: Rebecca is a 2 week old former FT infant who presented to the PICU with altered mental status and on further evaluation was found to be a victim of NAT. She is currently intubated and makes no spontaneous respiratory effort on the ventilator. Her neurologic exam reveals no evidence of purposeful movements and she is currently off of all sedation. Her brain imaging reveals significant injury consistent with hypoxic ischemic encephalopathy.

15. Giving the news: ASK-tEll-ASK • Scenario #1: Example Headline • Rebecca has unfortunately suffered a significant brain injury to the thinking/feeling part of her brain. We are worried that she will not be able to talk, walk, eat, or breathe on her own. • GIVE NEWS AND STOP TALKING……

16. Giving the news: ASK-tEll-ASK • Scenario #2: • Marcus is a 7 year old boy with a history of diffuse intrinsic pontine glioma which has progressed despite multiple rounds of therapy. He is currently admitted to the oncology service after he developed new neurologic deficits at home and unfortunately his repeat MRI now shows further progression of his disease.

17. Giving the news:ASK-tEll-ASK • Scenario #2: Example Headline • Unfortunately, Marcus’ scan shows his tumor is growing. His cancer is getting worse despite the treatment.

18. Giving the news: ASK-tEll-ASK • Let’s practice some of your own scenarios • Take a few minutes to think of a recent case you have had where you have had to give serious news • Think about what headline you would give and write it down

19. Giving the news: ask-Tell-ASk • Clarify the patient’s/family member’s understanding • “Sometimes as doctors we don’t explain things very well and I was wondering if you could tell me how you might tell your family members about what is going on so I make sure I explained it correctly.” • This is not always necessary but can be helpful to ensure on same page • Invite questions: “What questions do you have?”

20. ASK TELL ASK… • VITAL Talk Video (ASK-TELL-ASK)

21. Responding to the news: Expect emotion and Empathize “At the end of the day people won’t remember what you said or did, they will remember how you made them feel.” -Maya Angelou

22. Responding to the news: Expect Emotion and Empathize • After giving serious news, what is the typical patient response? • Emotion (sadness, anger, etc.) • Can be directed at the provider • May be followed by a question or statement • “How can this be happening?” • “Isn’t there something you can do?” • “You have to do something. You guys are supposed to be the experts!” FM Radio: Emotional Data AM Radio: Cognitive Data

23. Emotion and Cognition • Vital Talk Video

24. EMOTIONs AS data • Vital Talk Video

25. Responding to the news: Expect Emotion and Empathize • After giving serious news, what is the typical provider response? • Remember when they give you emotion, that means they heard the news so….. • Take a deep breath • Remember to STOP talking! • Respond to the emotion using NURSE statements

26. NURSE statements: Expect emotion and empathize • Naming • “I can see this was really surprising news”. • “It sounds like you are frustrated”. • Understanding • “I can’t imagine how hard this must be for you.” • Respecting • “ I can see how hard you have been advocating for your son.” • Supporting • “Our team is here to help you with this.” • Exploring • “Tell me more….”

27. Talking to children about serious news “ The most important thing in communication is hearing what isn’t said.” -Peter Drucker

28. Talking to Children about serious news • Children as young as 3 years can be aware of a terminal prognosis even without an adult telling them. • Avoidance can lead to: • Feelings of abandonment • Causes child to feel the need to protect the seemingly unknowing adult • We must encourage and help parents talk about this difficult subject Levetown, M. Pediatrics. 2008

29. Talking to Children about serious news • Remember ASK-TELL-ASK? • ASK: • What do you understand about what is going on right now? • TELL: • Sometimes we don’t have all the medications we need to make you better. I wish we did. • ASK: • What questions do you have for me? Can you say what we just talked about in your own words?

30. Talking to Children about serious news • Is talking about death harmful? • Kreicbergs et al, NEJM 2004, Talking about death with children (N=429 Bereaved Parents) • 1/3 talked, 2/3 did not talk • No parents regretted talking • Decisional regret more likely in parents who sensed (47%) vs. did not sense (13%) that their child was aware of his or her imminent death

31. Talking to Children about serious News • Will it cause patients and families to give up hope? • Mack, et al. JCO. 2007 • Universally parents want their physician to be honest while providing hope • Parents are more likely to feel hopeful when they recalled detailed prognostic discussions • Increased disclosure correlates with • Increased trust • Decreased emotional distress

32. Introducing Palliative and Hospice Care

33. Take Home points • When giving serious news, remember the reframe and ASK-TELL-ASK • ASK: For permission to talk about the news and what they understand so far • TELL: Give the headline and give news in small chunks • ASK: Encourage questions and ask for clarification • After giving serious news, STOP!!!!! • Remember your NURSE statements to help you respond to emotion

34. References • Buckman, R. How to Break Bad News: A Guide for Health Care Professionals. 223 pp. Baltimore, Johns Hopkins University Press, 1992 • Ptacek JT, Eberhardt TL. Breaking bad news: A review of the literature. JAMA. 1996; 276 (6):496-502 • Contro N, Larson J, Scofield S, Sourkes B, Cohen H. Family Perspectives on the Quality of Pediatric Palliative Care. Arch PediatrAdolesc Med. 2002; 156:14-19 • Kuttner, L. Talking with families when their children are dying. Medical Principles and Practice, 2007; 16:16-20 • McCabe M, Hunt E, Serwint J. Pediatric residents’ clinical and educational experiences with end-of-life care. Pediatrics, 2007; 121: e731-737 • Back A, Arnold R, Tulsky J. Mastering Communication with Seriously Ill patients: Balancing Honesty with Empathy and Hope. 158 pp. New York, Cambridge University Press, 2009 • www.vitaltalk.org

35. What questions do you have?