Breaking Bad News and Communicating with Families of Terminally Ill Patients

1. Breaking Bad News and Communicating with Families of Terminally Ill Patients Daniel O’Connell, Ph.D. 1816 1st Avenue West Seattle, WA 98119 danoconn@uw.edu 206 282-1007

2. Objectives • Understand the physician-patient-family psychology in giving and receiving bad news • Shifting treatment goals in light of terminal illness • The increasing role of palliative care • Describe and demonstrate a model for preparing for and having these conversations effectively

3. Bad News • “Any information that produces a negative alternation to a person's expectations about their own (or their loved one’s) present and future.” Aitini, E and Aleotti, P (2006). Breaking bad news in oncology: like a walk in the twilight. Annals of Oncology 17: 359-360

4. Examples of Bad News • Death • Terminal illness • Serious diagnosis • Failure of tx. plan to have hoped for effect • Complications • Pediatric developmental problems

5. A Definition of Palliative Care • Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness - whatever the diagnosis • The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment Public Opinion Strategies, 1/11/11 to 6/8/11

7. Robert Buckman’s 6 Point Protocol for Breaking Bad News • Set the stage • Patient/family perception • Invitation • Are your ready • How much would you like to know? • Knowledge: educate about the medical situation • Explore and empathize with emotions • Summarize the strategy and next steps and decision points. Garg A, Buckman R & Kason Y (1997) Teaching medical students to break bad news. Can Med Assoc J 156(8) 1159-1164.

8. Setting the Stage • Gather your facts and clarify their meaning • Arrange a private setting • Ask patient who else should be present • Part of planning conversation when possible • Allow enough time • Patient, family and physician seated comfortably, where voice tone and body language support the discussion

9. Try to avoid “the phone call” • Have a staff member call to set up meeting • “Dr. O’Connell asked me to call you to set up an appointment where he can go over your test results with you and plan next steps. When can you come in and please feel free to invite whomever you would like to accompany you to the appointment.” • “He wants to discuss this with you in person.” • “I don’t have the details myself. He just asked that I encourage you to make an appointment to come in as soon as you can and to feel free to bring someone with you if you would like.”

10. If you must have a phone call • “I am sorry to have to be giving you this news over the phone.” • “I am hoping that we can find a time to sit down and go over this together.” • “I imagine that the information I am going to share with you will raise as many questions as it answers. Let’s agree that this phone call will be just the start of the process that we will continue in greater depth in my office when you can come in.”

11. Patient’s/family’s current perception • Most patients and families have spoken with other healthcare providers and informal health advisors • Inquiring first makes for dialogue rather than monologue and cues you to the likely impact of your information. “What have you already been told about your illness?” “What is your understanding of what these tests would reveal to us?” “Remind me of what we you understood from our previous discussions.”

12. Invitation to share information • “Some patients and families prefer that I describe every medical detail while others want only the big picture. What would be most helpful to you at this point?” • “Would it help if I give a brief overview of where we have been so far and then what this new development/information suggests?”

13. Special Situations“I don’t want to know”“Don’t tell my mother” • “What concerns you the most about knowing the test results/ knowing what lies ahead?” • “It is very difficult to keep secrets in healthcare.” • “There are important decisions we will need you to make and knowing your preferences will allow us to better help you get through this.” • “ I can imagine that in _________ these kinds of things may have been handled very differently. Here in the United States we are required by the law to give patients an accurate picture of their illness so they can be part of decisions about what to do next. Is that something you were aware of?”

14. Giving patients and families the knowledge they need • Build from their perceptions “ I know you had been hoping…” • Provide-elicit-provide to keep conversational and relevant to their needs • Provide a “chapter” of information, then elicit their reaction, then provide more information, then elicit their reaction… “ The MRI scan shows that the chemotherapy has not slowed down the progression of your cancer. (elicit their reaction/questions, then continue). “We have run out of therapies that offer a reasonable chance of extending your life further. I am so sorry to be having to give you this news.” (elicit their reaction/questions then provide next chapter of information.

15. Providing Information • Things to cover • Diagnosis and degree of certainty • Treatment options, palliative care goals • Prognosis and degree of certainty in order to allow patient and family to plan • Support we can offer in all phases for medical, social, emotional and practical needs.

16. Brief summary of where we have been is helpful • “Let me briefly summarize what these new findings tell us…” • “How closely does this match your recollection of the process so far?” • Regularly summarize patient and family comments to keep on track and pick up on and address potential misunderstandings and recognize needs for support.

17. Explore, empathize and normalize patient and family emotions Empathy means demonstrating taking their perspective • “I can see that this is shocking news, very different from what we had been hoping to report.” • “It is normal to feel overwhelmed at first and to be unable to imagine how you and your family will cope.” • “I wish that we had better news to be giving you.” • “I wish that I could promise those outcomes, but what I can promise is that we will work with you to the best resolution possible.” • “We know that this will happen in a certain number of cases but I am very sorry that you are experiencing this complication and wish that it had not happened to you.”

18. Strategy and Summary • Provide patient with a clear next step • Make a clear arrangement for the next conversation. • “Let’s plan to talk again tomorrow when the situation is more stable and then I think some of the choices will be clearer.” • “So the decision we have to make today/within the next few weeks is________.” • “Let me summarize what we have discussed.” • “Let me summarize what we have agreed upon for now and how we will evaluate the plan as we go along.”

19. We want you to do everything… • “What do you understand _____ could do for your father at this point?” • “We are open to anything that offers a reasonable chance of helping rather than hurting you/him even more for no real benefit.” • “In my experience patients at this stage get no lasting benefit from ____ and often suffer more/ longer as a result.”

20. Negotiate new goals in light of terminal diagnosis • “Given that we cannot cure or slow down the progression of this terminal illness, let’s talk about what might now be the most important goals for your father and the family over the next days/weeks/months. We want to be sure we are helping you achieve those goals as much as possible.” • “If the last days/weeks/months of your life were to be most satisfying, what would you most want to be doing together?”

21. Family Spokesperson or Family Conference? • Ideally, identifying a spokesperson for the family will be most efficient. • Conferences are often next most efficient • “Let’s plan a time when your family can come and we will take the time to talk this all through together.” • Consider having a facilitator for this meeting • Consider inviting influential people to attend (clergy, trusted nurse, neighbor)

22. What do we have to offer? • The full spectrum of palliative care