1. Communication and Decision Making in Palliative Care Professor and Section Head, Palliative Medicine, University of Manitoba Medical Director, WRHA Adult and Pediatric Palliative Care Mike Harlos MD, CCFP, FCFP

2. The presenter has no conflicts of interest to disclose

3. Objectives To consider the roles that the patients, families, and the health care team have in decision- making To consider the role of effective communication in reviewing health care options To explore an approach to health care decision- making

4. http://palliative.info

6. PatientFamily Friends/Community Involved Health Care Team You “Ripple Effect” Of A Patient’s Death

9. Silence Is Not Golden  Don’t assume that the absence of question reflects an absence of concerns  Upon becoming aware of a life-limiting Dx, it would be very unusual not to wonder: –“ How long do I have?” –“How will I die”  Waiting for such questions to be posed may result in missed opportunities to address concerns; consider exploring preemptively

10. Setting The Stage  In person  Sitting down  Minimize distractions  Family / friend possibly present 10

11. Connecting A foundational component of effective communication is to connect / engage with that person… i.e. try to understand what their experience might be If you were in their position, how might you react or behave? What might you be hoping for? Concerned about? This does not mean you try to take on that person's suffering as your own Must remain mindful of what you need to take ownership of (symptom control, effective communication and support), vs. what you cannot (the sadness, the unfairness, the very fact that this person is dying)

12. Look Up Recommended Dose “Look Up Recommended Dose”: Check with health care team, review chart to see what patient has been told and understands Check with patient/family what they understand Titrating OpioidsTitrating Information Start conservatively, usually with lower end of recommended range unless severity of distress dictates otherwise Observe/assess response, titrate accordingly Start Conservatively: “Sometimes people in these situations wonder about…” “I’m wondering what made you ask this today?” Observe/assess response, titrate accordingly

13. Be Clear people often speak “around” difficult topics – make sure everyone is clear about what is being discussed messages need to be clear, though not brutally blunt. you can start with a “vague and gentle”, paced approach – however you may need to be increasingly direct intuitive approach to how direct you need to be “The single biggest problem in communication is the illusion that it has taken place.” George Bernard Shaw

14. Examples Gently Working Towards A Clear Message What you want the family to understand A gentle, but vague message – not quite enough A better way – an increasingly direct message that conveys the message Your Mom is likely to die within 48 hrs “She is changing quickly, and things are getting close” “She is changing quickly, and we believe things are getting close. Judging by what we’re seeing, it seems likely that your Mom will die within the next couple of days” Your Mom has an irreversible end- of-life delirium, and must remain sedated until dying “There’s been a big change, and your Mom is much more confused. We can give her something to settle her.” [ the problem here is that families may expect that this is temporary] “She has become much more confused, and is changing quickly. We believe that she will only live another day or two. We can give her something to settle her, but she must remain sedated until she dies from her underlying illness, as we can’t fix the reasons for her worsening confusion.”

16. 16 “Don’t Tell Him He’s Dying…” Sometimes families will want to protect a loved one from knowing that they are dying Complex - don’t simply respond with “It’s their right to know” Explore reasons / concerns – the “micro-culture” of the family Rather than a “right to know”, people have the right to accept or decline information; they may indeed want to defer to family Ultimately, may need to check with patient: “Some people want to know everything they can about their illness, such as results, prognosis, what to expect. Others don’t want to know very much at all, perhaps having their family more involved. How involved would you like to be regarding information and decisions about your illness?”

17. 1.Acknowledge/Validate and Normalize “ That’s a very good question, and one that we should talk about. Many people in these circumstances wonder about that…” 2.Is there a reason this has come up? “I’m wondering if something has come up that prompted you to ask this?” 3.Gently explore their thoughts/understanding “It would help me to have a feel for what your understanding is of what is happening, and what might be expected” “Sometimes when people ask questions such as this, they have an idea in their mind about what the answer might be. Is that the case for you? ” 4.Respond, if possible and appropriate If you feel unable to provide a satisfactory reply, then be honest about that and indicate how you will help them explore that Responding To Difficult Questions

18. Prognosticating difficult – no studies or data can take into consideration all of the specific considerations for a given situation of advanced illness some circumstances are fairly consistent – e.g. complete absence of fluid intake (survival usually a few days or up to two weeks) the most helpful predictor as end of life nears is momentum of change – i.e. the illness trajectory; how quickly the person is declining

19. 19 “How long have I got?” DISCUSSING PROGNOSIS 1.Confirm what is being asked – often question is vague 2.Acknowledge / validate / normalize 3.Check if there’s a reason that this is has come up now 4.Explore “frame of reference” (understanding of illness, what they are aware of being told) 5.It would be helpful if they could describe how the last month or so has been for them (“momentum of decline”) 6.How would they answer that question themselves? 7.Answer the question

20. “First, you need to know that we’re not very good at judging how much time someone might have... however we can provide an estimate. We can usually speak in terms of ranges, such as months-to-years, or weeks-to-months. From what I understand of your condition, and I believe you’re aware of, it won’t be years. This brings the time frame into the weeks-to-months range. From what we’ve seen in the way things are changing, I’m feeling that it might be as short as a couple of weeks, or perhaps up to a month or two”

21. 21 “Many people think about what they might experience as things change, and they become closer to dying. Have you thought about this regarding yourself? Do you want me to talk about what changes are likely to happen?” Talking About Dying

22. First, let’s talk about what you should not expect. You should not expect: – pain that can’t be controlled. – breathing troubles that can’t be controlled. – “going crazy” or “losing your mind”

23. If any of those problems come up, I will make sure that you’re comfortable and calm, even if it means that with the medications that we use you’ll be sleeping most of the time, or possibly all of the time. Do you understand that? Is that approach OK with you?

24. You'll find that your energy will be less, as you’ve likely noticed in the last while. You’ll want to spend more of the day resting, and there will be a point where you’ll be resting (sleeping) most or all of the day.

25. Gradually your body systems will shut down, and at the end your heart will stop while you are sleeping. No dramatic crisis of pain, breathing, agitation, or confusion will occur - we won’t let that happen.

26. Day 1 Final Day 3 Day 2 The Perception of the “Sudden Change” Melting ice = diminishing reserves When reserves are depleted, the change seems sudden and unforeseen. However, the changes had been happening. That was fast!

27. Anticipating Predictable Issues The clinical course at end of a progressive illness tends to be predictable... some issues are “predictably unpredictable” (such as when death will occur) Many concerns can be readily anticipated Preemptively address communications issues:  oral intake – food/fluids, medications  sleeping too much  are medications causing the decline?  how do we know he/she is comfortable?  can he/she hear us?  don’t want to miss being there at time of death  how long can this go on? what will things look like?

28. How Can I Start The Conversation Proactively? With difficult conversations, the hardest part is starting them; once they get going they tend to take their own direction.

29. Potential Ways To Start Conversations “ You might be wondering why your Mom is… - more sleepy, spending more time in bed - weaker, seeming to have less energy - not eating or drinking very much - etc… We’ve noticed that too, and thought it would be good to talk about these changes, and about what your thoughts and concerns are ” Other potential ways to start…  “Many families in this situation wonder about…”  “Sometimes when things start to change, families have concerns about…”

30. Patient/Family Understanding and Expectations Health Care Team’s Assessment and Expectations What if…? Common ground– the scary “what-if?...” territory Sometimes it seems that the health care team and patients/families are in two separate rooms – the patient/family in the “don’t get it” or “won’t accept it” room and the health care team in the “we know what’s coming” room

31. “I know it’s been a difficult time recently, with a lot happening. I realize you’re hoping that what’s being done will turn this around, and things will start to improve… we’re hoping for the same thing, and doing everything we can to make that happen. Many people in such situations find that although they are hoping for a good outcome, at times their mind wanders to some scary ‘what-if’ thoughts, such as what if the treatments don’t have the effect that we hoped? Is this something you’ve experienced? Can we talk about that now?”

32. Displacing the Decision Burden “If he could come to the bedside as healthy as he was a month ago, and look at the situation for himself now, what would he tell us to do?” Or “If you had in your pocket a note from him telling you that to do under these circumstances, what would it say?”

33. Life and Death Decisions?  when asked about common end-of-life choices, families may feel as though they are being asked to decide whether their loved one lives or dies  It may help to remind them that the underlying illness itself is not survivable… no decision can change that… “ I know that you’re being asked to make some very difficult choices about care, and it must feel that you’re having to make life-and- death decisions. You must remember that this is not a survivable condition, and none of the choices that you make can change that outcome. We know that his life is on a path towards dying… we are asking for guidance to help us choose the smoothest path, and one that reflects an approach consistent with what he would tell us to do.”

35. The CPR Issue Simplistically, there are two main circumstances under which the heart stops: 1.a primary cardiac problem – e.g. ischemic event, arrhythmia 2.everything else is in such a mess that the heart simply can’t keep going – e.g. multisystem failure in advanced cancer; sepsis; progressive respiratory compromise; acute stroke. etc CPR was developed to attempt restoration of cardiac function in the 1 st of the above situations In the 2 nd of the above situations, unless you can reverse the underlying non-cardiac problems that resulted in cardiac arrest, CPR cannot work and should not be offered as an option  Rather, it can be acknowledged that while CPR is something that they may have heard about, it cannot work when the reasons that the heart has stopped can’t be fixed. Consequently, it won’t be attempted.

36. Goal-Focused Approach To Decisions Goals not achievable, or inconsistent with standard of medical care Discuss; explain that the intervention will not be offered or attempted. If needed, provide a process for conflict resolution:  Mediated discussion  2nd medical opinion  Ethics consultation  Transfer of care Goals not achievable, or inconsistent with standard of medical care Discuss; explain that the intervention will not be offered or attempted. If needed, provide a process for conflict resolution:  Mediated discussion  2nd medical opinion  Ethics consultation  Transfer of care Goals achievable and consistent with standard of medical care Proceed if desired by patient or substitute decision maker Goals achievable and consistent with standard of medical care Proceed if desired by patient or substitute decision maker Uncertainty RE: Outcome Consider therapeutic trial, with: 1.clearly-defined target outcomes 2.agreed-upon time frame 3.plan of action if ineffective Uncertainty RE: Outcome Consider therapeutic trial, with: 1.clearly-defined target outcomes 2.agreed-upon time frame 3.plan of action if ineffective What are the goals of what is being considered? Whose goals are they? How and when will success in achieving those goals be assessed? What are the goals of what is being considered? Whose goals are they? How and when will success in achieving those goals be assessed? Things that work Things that don’t work Things that might work

37. Whose role is it to discuss ACP/Goals of Care?

38. Health Care Directive document outlining care expectations supported by provincial legislation 16+ yrs, competent can name proxy can be made on any piece of paper helps inform the ACP process, but not required for ACP Health Care Directive document outlining care expectations supported by provincial legislation 16+ yrs, competent can name proxy can be made on any piece of paper helps inform the ACP process, but not required for ACP Advance Care Planning Consensus-based process Patient/family/SDM* and Health Care Team WRHA Policy – not a provincial initiative; no related legislation Can be done if patient not able to participate −cognitive impairment −children Advance Care Planning Consensus-based process Patient/family/SDM* and Health Care Team WRHA Policy – not a provincial initiative; no related legislation Can be done if patient not able to participate −cognitive impairment −children * SDM = Substitute Decision Maker

39. ComfortComfort MedicalMedical ResuscitationResuscitation The three ACP levels are simply starting points for conversations about goals of care when a change occurs

40. Helping Families At The Bedside  physical changes – skin colour; breathing patterns  time alone with patient  can they hear us?  how do you know they’re comfortable?  missed the death