1. COMMUNICATION: Disclosure And Discussion During Family Meeting And MDT Conference Maria Fidelis Manalo, MD, MSc Palliative Care

2. FAMILY MEETING & MDTC The family meeting and MDTC are valuable clinical tools for communicating medical information, delineating the goals of care, and facilitating decision making in cancer treatment.

3. The family meeting/MDTC are ideal forum for: Eliciting caregiver concerns. Providing clear information about treatment. Facilitating end-of-life care decisions. Deciding to avoid inappropriate treatment options. In addition, caregivers can receive reassurance that symptoms will be adequately managed and patient preferences will be respected

4. Successful family meetings/MDTC promote a safe setting in which caregivers can process emotions and have their concerns validated.

5. Family meetings/MDTC are most effective when: The agenda is transparent to patients, families, and professional staff. There is a clearly designated staff person in the role of leader. Family caregivers are given the opportunity to ask questions, express concerns, and confront painful emotions with the help of trained and compassionate professionals.

6. Family Conference/MDTC Process Steps Why are you meeting? Clarify conference goals in your own mind. What do you hope to accomplish? Where: A room with comfort, privacy and circular seating. Who: Patient (if capable to participating); legal decision maker/health care power of attorney; family members; social support; key health care professionals.

7. Introduction and Relationship Building  Introduce self & others; review meeting goals; clarify if specific decisions need to be made.  Establish ground rules: each person will have a chance to ask questions and express views; no interruptions; identify legal decision maker; and describe importance of supportive decision making.  If you are new to the patient/family, spend time seeking to know the “person”—ask about hobbies, family, what is important in her or his life, etc.

8. Determine what the patient/family already knows.  Tell me your understanding of the current medical condition? Ask everyone in the room to speak. Also ask about the past 1-6 months—what has changed in terms of functional decline, weight loss, etc.

9. Review medical status  Review current status, prognosis and treatment options.  Ask each family member in turn if they have any questions about current status, plan & prognosis.  Defer discussion of decision making until the next step.  Respond to emotional reactions.

10. Family Discussion with a Decisional Patient  Ask the patient: “What decision(s) are you considering?”  Ask each family member: “Do you have questions or concerns about the treatment plan? How can you support the patient?”

11. Family Discussion with a Non-Decisional Patient  Ask each family member in turn: “What do you believe the patient would choose if the patient could speak for him or herself?”  Ask each family member: “What do you think should be done?”  Ask if the family would like you to leave room to let family discuss alone.

12. When there is no consensus:  Re-state: “What would the patient say if they could speak?” Ask: “Have you ever discussed with the patient what he or she would want in a situation like this?”  If you, as a clinician, have a firm opinion about the best plan of care, recommend it simply and explicitly, and explain why.  Use time as ally: schedule a follow-up conference the next day.  Try further discussion: “What values is your decision based upon? How will the decision affect you and other family members?”  Identify other resources: Minister/priest; other physicians; ethics committee.

13. Wrap-up:  Summarize consensus, disagreements, decisions, & plan.  Caution against unexpected outcomes.  Identify family spokesperson for ongoing communication.  Document in the chart – who was present, what decisions were made, follow-up plan.  Don't turf discontinuation of treatment to nursing.  Continuity – Maintain contact with family and medical team. Schedule follow-up meetings as needed.

14. DISCLOSURE Bad news can include any information that may seriously affect a person’s perception and experience of their future How information is delivered has tremendous impact on how patients and family/caregivers hear the news, how they cope and how they make decisions Everyone is unique in how they would like to be given information, what information they want to know and whom they want to know - INCTR Palliative Care Handbook http://inctr-palliative-care-handbook.wikidot.com/breaking-bad-news

15. KEYPOINTS It is difficult to estimate the impact of the bad news until one has learned the recipient’s expectations and understanding of the situation Speaking openly and with compassion and empathy shows patients and family/caregivers you care - INCTR Palliative Care Handbook http://inctr-palliative-care-handbook.wikidot.com/breaking-bad-news

16. The problem, not only in the Philippines but elsewhere, is the LACK OF ADEQUATE knowledge-attitude-practice about truth-telling among health practitioners & among faculty members in the colleges of medicine & nursing! REVIEW OF LITERATURE: Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review of 46 studies by Hancock et al., 2007

17. Barriers to Breaking Bad News: Health Care Professionals Fear of their own emotions Fear of patient and family/caregiver emotions and reactions Uncertainty in how to support these responses Communicating information in technical language that is not easily understood Avoiding discussion of distressing information Giving false hope – telling patients and family/caregivers what they think they want to hear - INCTR Palliative Care Handbook http://inctr-palliative-care-handbook.wikidot.com/breaking-bad-news

18. Barriers to Breaking Bad News: Patients & Family Caregivers Fear of what might be said Not feeling prepared Feeling that people are not being truthful or honest Feeling that their decisions and hopes are not being respected May only be able to take in information a little bit at a time May have differences in what information they want each other to know May have a need to seek a second opinion May have limited understanding of medical/physical processes May be embarrassed by own lack of knowledge - INCTR Palliative Care Handbook http://inctr-palliative-care-handbook.wikidot.com/breaking-bad-news

19. Studies of patients’ and/or caregivers’ views & impact of disclosing/withholding prognostic information on patients/caregivers In a US study of 20 nurses, 10 doctors and 5 caregivers by Norton and Talerico, participants reported that HPs who were uncomfortable with discussing prognosis and EOL issues tended to avoid these conversations, resulting in patients receiving burdensome and painful treatments and not having sufficient time to prepare for death. - Hancock et al, Palliative Medicine 2007

20. Learning points Not if, but how: talk with patients about prognosis & code status! Seriously ill patients are not generally harmed by talking about their prognosis Within a relatively short conversation, seriously ill patients easily accepted, and even valued, frank discussions about forgoing life support Ask the patient about letting a family member and/or a nurse participate in the talk as such participation may not always be desired by the patient - Rurik Löfmark, Tore Nilstun Postgrad Med J 2000;76:26–28

21. Learning points : Not if, but how: talk with patients about prognosis & code status ! Studies show that patients can discuss the topic without necessarily increasing anxiety. Avoiding the topic can have adverse outcomes. By discussing this information sensitively, and encouraging the patient to share in decision-making, the HP can help the patient reset goals and choose appropriate supportive treatments rather than those that are burdensome. Communications skills training may equip doctors to discuss prognostic and EOL issues more confidently. - Hancock et al, Palliative Medicine J 2007

22. Breaking Bad News: S-P-I-K-E-S Strategy Robert A. Buckman, MD, PhD University of Toronto, Canada Community Oncology, March/April 2005

23. S-Setting  Privacy  Involve significant others  Sit down  Look attentive and calm  Listening mode: silence and repetition  Availability

24. P-Patient’s perception  Find out how much the patient knows.  “What did you think was going on with you when you felt the lump?”  “What have you been told about all this so far?”  “Are you worried that this might be something serious?”

25. I-Invitation  Find out how much the patient wants to know.  “Are you the kind of person who prefers to know all the details about what is going on?”  “How much information would you like me to give you about your diagnosis and treatment?”  “Would you like me to give you details of what is going on or would you prefer that I just tell you about treatments I am proposing?”

26. K-Knowledge Share the information “Unfortunately, I’ve got some bad news to tell you, Mr. Cruz.” “Mrs. Santos, I’m so sorry to have to tell you….”  Use the same language the patient uses  Avoid technical scientific language  Give the information in small chunks  Tailor the rate at which you provide information to the patient

27. E-Empathy Step 1: Listen for and identify the emotion (or mixture of emotions). “How does that make you feel?” “What do you make of what I’ve just told you?” Step 2: Identify the cause or source of the emotion.

28. E-Empathy Step 3: Show your patient that you have identified the emotion and its origin. “Hearing the result of the bone scan is clearly a major shock to you.” “Obviously, this piece of news is very upsetting.” “Clearly, this is very distressing.”  Respond to the patient’s thoughts and feelings  Identify the emotionally critical misperception (ECM)

29. E-Empathy  Validation – normalize the patient’s feelings  “I can understand how you can feel that way.”  Let the patient know that showing emotion is perfectly normal, to minimize feelings of embarrassment and isolation

30. S-Strategy/Summary  Educate, summarize, and concretize plan of action  Ensure that the patient understands the information so that you and the patient are both on the same page.  Summarize the information in your discussion and give the patient an opportunity to voice any major concerns or questions.

31. S-Strategy/Summary  Educate, summarize, and concretize plan of action  Outline a step-by-step plan, explain it to the patient, and contract about the next step.  Be explicit about your next contact with the patient ("I'll see you in clinic in 2 weeks") or the fact that you won't see the patient ("I'm going to be referring you to another specialist, so you will see the oncologist in his/her clinic").

32. HANDLING DIFFICULT QUESTIONS “Is it cancer?” “Am I dying?” “What is going to happen to me?” KEYPOINTS: Find out the patient’s perceptions:  “What makes you feel it may be cancer?”  “What makes you feel that you are dying?” After obtaining a response, repeat the question if necessary by asking:  “Are there any other reasons for your feeling this way?” - Watson et al, Oxford Handbook of Palliative Care, 2009

33. COLLUSION or CONSPIRACY OF SILENCE The health care professional is approached or pressurized by a relative to withhold medical information from the patient. KEYPOINTS: Focus on:  The relative’s feelings  The relative’s reasons for not wanting to be truthful  Acknowledging the relative’s motives, e.g., protecting the patient from distress  The strain placed on the relative-patient relationship by not being truthful with someone who they are usually very close to emotionally  The relative’s perception of the patient’s understanding. Seek to identify any evidence that the patient might already suspect the truth. - Watson et al, Oxford Handbook of Palliative Care, 2009

34. COLLUSION or CONSPIRACY OF SILENCE The health care professional is approached or pressurized by a relative to withhold medical information from the patient. KEYPOINTS: Then:  Offer to assess the patient’s understanding of their illness directly  Reassure the relative that information will not be forced onto the patient if such information is not explicitly requested or wanted by the patient - Watson et al, Oxford Handbook of Palliative Care, 2009

35. Dealing with Anger Acknowledge the anger:  “ You seem to be very angry.” Invite the patient/relative to explain the cause of the anger:  “Can you help me understand what is making you so angry?” Listen to their story to get as much information as possible Try not to be defensive, even if the anger seems to be misdirected. - Watson et al, Oxford Handbook of Palliative Care, 2009

36. Dealing with Anger Focus on the individual’s stress/feelings Apologize if appropriate Clarify the situation if appropriate, e.g.  “ It must be very difficult for you to see your husband in pain.” If possible, negotiate a mutually acceptable solution. - Watson et al, Oxford Handbook of Palliative Care, 2009

37. Exploration of Feelings (e.g. anxiety) KEY POINTS: Recognition Acknowledgement Permission Understanding Empathic acceptance Assessment Alteration (if appropriate) Non-verbal/verbal evidence “I can see you are anxious” “It’s ok to be anxious” “I want to find out what is making you anxious” “You are anxious because…” Severity and effects of anxiety Removal of stress, cognitive challenge, boosting coping strategies, medication - Watson et al, Oxford Handbook of Palliative Care, 2009

38. Handling Denial Health professionals may explore the denial to determine if it is an absolute barrier to understanding, but forcing through it could lead to severe psychological problems. If there is no evidence of awareness in the patient, leave the situation as it is. Ensure regular follow-up to reassess the denial. It may well become much less absolute, especially in light of the changing clinical situation and increasingly unpleasant symptoms. - Watson et al, Oxford Handbook of Palliative Care, 2009

39. Handling Denial Look for any evidence that denial is not absolute (a window), e.g.: Now: “How do you feel things are going at the moment?” Past: “Has there ever been a moment when you think things aren’t going to work out?” Future: “How do you see your illness affecting your future?” - Watson et al, Oxford Handbook of Palliative Care, 2009

40. UNREALISTIC EXPECTATIONS KEY: Establish WHY patients believe what they do Use the patient’s cues to explore their perception of their situation  “You say you have had quite a bit more pain recently? What do you think is causing the problem?” Using negotiation, test out whether they really believe what they are saying, or whether they are simply trying to cling onto false hope. - Watson et al, Oxford Handbook of Palliative Care, 2009

41. UNREALISTIC EXPECTATIONS Gently challenge unrealistic beliefs about outcomes by confronting any inconsistencies in the story Look for windows of worry which indicate that denial is not absolute and that the patient has allowed themselves to look at realistic scenarios on occasions  “Do you ever worry about the possible outcomes?” Establish whether the patient is ill-informed and needs to be told bad news or is in absolute denial. - Watson et al, Oxford Handbook of Palliative Care, 2009

42. End-of-Life Care Discussions About Advance Directives

43. Are physicians ethically and/or legally required to provide all life-sustaining measures possible? No. To the contrary, patients have a right to refuse any medical treatment, even life-sustaining treatments such as mechanical ventilation, or even artificial hydration and nutrition.

44. Is withdrawal or withholding of treatment equivalent to euthanasia? No. There is a strong general consensus that withdrawal or withholding of treatment is a decision that allows the disease to progress on its natural course. It is not a decision to seek death and end life. Euthanasia actively seeks to end the patient's life.

45. Conversations about CPR or DNR preferences vary greatly depending on the age, health and health literacy of the patient. With all patients it is important to avoid vague or overly technical terminology and to use vocabulary they understand. The question “Would you want us to do everything?” is not helpful for eliciting preferences; it confuses patients and implies that less than optimal care may be offered if the patient answers “no” to the question. Discussing Code Status with Patients/Families Stone and Tulsky, AMA September 2006

46. CPR should not always be the standard of care, so it is crucial that patients understand the difference between withholding CPR and withholding treatment of their underlying illness and its associated symptoms. Stone and Tulsky, AMA September 2006

47. CODE STATUS DISCUSSIONS Using S-P-I-K-E-S REFERENCE: FAST FACTS AND CONCEPTS #23 Charles F von Gunten MD, PhD and David E Weissman Medical College of Wisconsin End of Life/Palliative Education Resource Center (EPERC) www. eperc.mcw.edu

48. “Death is not extinguishing the light; it is putting out the lamp because the Dawn has come.” - Rabindranath Tagore Truth may hurt but deceit hurts more!