Communication in Palliative Care

1. Communication in Palliative Care Dr. Kwadwo Kyeremanteng, MD, FRCPC Palliative Care & Critical Care Montfort Hospital & TOH Assistant Professor, University of Ottawa

2. Objectives • Outline an appropriate method of breaking bad news to patients and families. • Describe an approach to discussing prognosis with patients facing a life-limiting illness and their families. • Describe perceptions of dying and death in different cultures. • Demonstrate an approach to issues in end-of-life care, including attitudes towards dying and death, communication, truth-telling and autonomy that is respectful of different cultures and religions. • Discuss issues of truth-telling for palliative care patients, including the influence of cultural issues. • Describe the role and structure of interprofessional/ interdisciplinary family meetings with palliative care patients and their families.

3. Ms. P • Ms. Péan, a 58-year-old woman, presents to Emergency Department with progressive vague abdominal pain for the past month, anorexia, weight loss, nausea and abdominal distention, and major weakness • CT scan of abdomen/pelvis: • Diffuse peritoneal carcinomatosis and ascites • Primary cancer not visualized • You are the on-call resident for admissions – the Emergency physician calls you to admit the patient for management of symptoms and investigations. He states that he did not discuss the CT scan results in detail, due to a lack of time and privacy…

4. Ms. P: “I really want to know what is wrong with me.” What is your approach to this difficult discussion?

5. Objective #1 – Delivering bad news • SPIKES approach • S: Setting • P: Patient’s perception • I: Invitation • K: Knowledge • E: Exploring/Empathy • S: Strategy/Summary

6. S – Setting • Preparation • Review the file and investigations, discuss with the various specialists involved • Private area • Avoid hallways • Silence • Turn off the TV, radio, etc. • Sit down! (proven in studies!!!) • Be aware of non-verbal communication • Yours and the patient’s • Who should be present for the discussion?

7. P – Patient’s perception Learn what the patient (and family) already knows/understands about the situation Example: “I always like to begin by asking you to tell me what you understand (or what you have been told) about the situation, and then I will add to that information.” Example: “What have the doctors told you about your condition?” **also helps to determine the patient’s capacity

8. I - Invitation How much information does the patient want to know? “What would you like to know about what is happening with you?” “Are you the type of person who likes to know everything up front, or do you prefer a little information at a time?” “Are you the type of person who wants to know all the details, or only the general outlines?” “Are you interested in having information, or do you prefer that I talk to your family instead?”

9. K – Knowledge • Start with a sentence that warns of bad news: • “I wish I had good news for you, but unfortunately, the situation….” • Give information in “chunks” • Monitor the reactions of the patient/family and adjust accordingly • Avoid medical jargon but use the proper words (e.g. cancer and not “spots”) • Do not be afraid of SILENCES • Repeat the information • Check that the information has been understood

10. E – Exploration/Empathy • Example: • “This must be very difficult.” • “Even though we discussed this possibility, that does not make it any easier.” • “How are you taking this news?” • Avoid: • “I understand.” • False or premature reassurances

11. S – Strategies/Summary Offer your recommendation Ask the patient to summarize what he/she has understood Summarize Identify the patient’s support network (family, friends, pastoral counselling, social work, etc.) Ask if there are any questions, other concerns, etc. Discuss the next steps Arrange for an appointment, follow-up visit in the near future

12. Ms. P • When you admit Ms. P, you explain that you have a number of things to discuss with her. • She would like to have her daughter, Marie, present. • You schedule time the next day to discuss the CT scan findings and plan for further investigations.

13. Ms. P • During the meeting with Ms. P and Marie, you explain that the investigations to date show metastatic cancer. Several investigations will be done to try to determine the primary cancer (additional CT scans, biopsy, etc.). • During the meeting, Ms. P does not say much. When you try to explore her feelings or ask if she has any questions, she remains vague, reserved. • You decide to give her some time to “take it all in.” • Her daughter, Marie, approaches you outside the room: “Doctor, I understand very well. How much time does she have left?”

14. Objective #2 – Discussing prognosis with patients facing a life-limiting illness and their families

15. Importance of discussing prognosis • Patient autonomy • Allows for decision-making around treatment options • E.g. Do I want to go ahead with chemotherapy? • Helps to establish appropriate goals of care • Helps to transition from a curative approach to a palliative care approach • Allows enough time for planning ahead (advance directives, will, finances, power of attorney, discussions around end of life preferences, etc.) • Planning and options for discharge • Palliative Care Unit versus Long-Term Care • Allows for open discussions on end of life, fears/anxieties, etc.

16. “An underestimated aspect of our daily work” • In an audit of 325 consecutive referrals to a palliative care service in a tertiary care hospital: • Discussions on prognosis and goals of care were the most common function performed (95% of cases)

17. Do patients want to know? • United Kingdomstudy: 85% of patients with palliative cancer wanted to know as much information as possible (good or bad) • American study: 93% of patients with cancer and theirfamiliesratedprognostic information as “extremely important”

18. Canadian study on prognostic discussions (Heyland et al. 2009) Patients with cancer weremuch more likely to have a discussion about prognosisthan patients with a non-cancerousdisease (26% versus 13%) Satisfaction with end of life care washigheramong patients/familieswhohaddiscussedprognosis

19. “I didn’t expect him to die so soon. I got the feeling the doctors weren’t entirely honest with us about his condition. My husband resisted talking about dying and after 40 years of marriage I feel he let me down by not opening up and I guess I let him down for not knowing how to talk about some of the things that I needed to discuss. It would have been nice closure if things had been different in the end. I can never get that time back.”– Wife of participant in end-of-life study

20. So if patients want to know, why do wehesitate? • Uncertainty around the disease trajectory • Particularly with non-cancerous diseases • Discomfort around these discussions, lack of training • Lack of time • Waiting for the patient to ask the question • Concerns about a negative impact on the patient • Fear of ending hope • Fear of increasing anxiety/depression • Fear of harming the doctor-patient relationship • Requests from family members to withhold this information

21. Do discussions on Px increaseanxiety/depression? • NO! • Benefits cited: • HOPE • Increases the feeling of CONTROL • Facilitates advance planning • Reduces ANXIETY • Increases confidence and satisfaction with care • Enhances spiritual well-being • Canadian study by Chochinov (2000): no relationship between knowledge of prognosis and: • Survival time • Intensity of pain • Loss of hope • Desire for accelerated death S Innes et al. Advanced Cancer Patient’s Prognostic Information Preferences: A Review. Palliative medicine. 2009; 23: 29-39

22. Patients who had discussions on end of life had: • No higher rate of depression or anxiety • Lower rates of mechanical ventilation and resuscitation • More frequent and earlier involvement in palliative care services • Better management of the family’s bereavement Wright AA, et al: Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavementadjustment. JAMA 2008

23. But HOW MUCH information? • Almost all patients want qualitative information • some (but not all) want quantitative information • Patients want honest and clear information!! • Not always evident! • Honest information, balanced by understanding, sensitivity and empathy • Patients want to negotiate the amount of information and when this information is given • Needs can change as the illness progresses • Fewer details when people are very ill? • Individualized approach • Check what the patient wants to know and when

24. Communicating the prognosis – General approach • Validate the importance of the question • Admit to not knowing exactly • Estimate in general terms: • Hours to days • Days to weeks • Months • No specific dates or numbers • Statistics? • 30% yes; 32% no; 38% neutral • Discuss with a family member/friends present? • Approximately 60% of patients want this

25. Ms. P • First you explain to Marie that with metastatic cancer, recovery is unlikely • Before answering more specifically re: prognosis, you further explore the changes in your patient in recent weeks • Marie tells you there has been a very rapid decline in Ms. Péan’s functioning in the past few weeks. She spends many hours in bed during the day and the rest of the time, she sits in the chair. • Because of this, you explain to the daughter that there may be only weeks or months left, but that there is still a lot of information to obtain in order to confirm.

26. Ms. P • Marie exclaims: • “You cannot tell her she will not recover, that she is dying!” » • “She will give up.” • “In our culture, we do not talk about death!”

27. Objectives #3 and #4 – Describe an approach for exploring various cultural perspectives of patients and their families • CMPA Perspective, March 2014: Page 12-14: Cultural Competence http://viewer.zmags.com/publication/b89b98bc#/b89b98bc/1

28. Objective #5 - “Truth telling” • We have an ethical and legal obligation to give patients as much information as desired concerning their illness, treatments, etc. • Respects the ethical principle of autonomy • Allows patients to make informed decisions • Most people, with some exceptions, want to know the truth • Most people already know they have a serious illness; withholding information can aggravate distress/anxiety • This can vary depending on the culture, but avoid generalizing • It amounts to checking with the patient about what information is desired • Allows for negotiating the amount of information to be given at one time

29. “Do not tell her she is dying” • If the patient wants to beinformed, itishis/her right (with or without the family’s consent) • Explore the reasonswhy the familydoes not want the information disclosed • Validatetheirconcerns (oftenfear of causing the patient distress) • Explainthatgenerally, patients already know thereissomethingseriousthatisn’t right • Explainthatkeepingthiskind of thing secret is a burden on the family, as well as the patient

30. Explain that you have an ethical obligation to at least check with the patient about what he/she wants to know • Reassure the family that the information will not be “forced” on the patient • Check what/how/when information is given • Invite family members to be present for the discussion • If there is a language barrier, it is better to obtain the services of a professional interpreter

31. Ms. P • You listen attentively to Marie’s concerns, and suggest a family meeting to clarify everything

32. Objective #6 – Family meeting • Family meetings are an important and effective tool in palliative care • Possible goals: • Ensure that all family members and the patient have a good understanding of the disease and its trajectory • Review goals of care • Explore expectations • Resolve conflicts • Make difficult decisions • Plan in advance

33. Before the meeting… • Be prepared: • Make sure you have read over the file, investigation results, treatments to date • Discusswith team members (e.g. consultants, interprofessional team) whowill not bepresent • Anticipate possible questions • If a difficult meeting isanticipated, consider a team meeting BEFORE the family meeting in order to ensure a cohesiveapproach • Identifywhoshouldbepresent • Patient? – usuallyyes if “capable” • Whichmembers of the attending team? • Whichfamilymembers?

34. Steps • Introductions • Review the meeting’s objectives • Ask whether the patient/family have other things they would like included on the agenda • Establish basic rules • Everyone will have the chance to speak/ask questions without interruption • Explore the patient’s/family’s understanding of the illness, situation, etc. • Review the medical condition, course, diagnoses, treatments to date • Correct possible gaps between what the patient/family have understood and reality

35. Steps (continued) • Check if there are any questions about the information presented • Explore the patient’s/family’s expectations and goals of care • Discuss possible treatment options • Discuss discharge options if relevant • Anticipate possible scenarios on discharge and discuss case management • Planning ahead • Review and summarize • Document the file

36. AND MS. P…

37. Questions? Comments? Thank you!