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(PC), FCFP

2. The presenter has no conflicts of interest to disclose

3. Objectives Realize that effective communication involves connection – one person to another Know that many – if not most – communication issues in palliative care arise predictably and can be approached proactively Realize that commonly encountered communication issues can be approached with a guiding framework Appreciate that how care options (and non-options) are discussed profoundly impacts care decisions and decision-maker burden By the end this presentation, participants will:

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

5. The first rule about death and dying is: You don’t not talk about death and dying (with apologies to Fight Club, and to grammarians everywhere)

8. 1. Acknowledge, validate the questions asked or concerns expressed – “Sit down” 2. What is happening in this person’s life? What is their experience with this illness, and the experience of their family? – “Lean In” Sit Down, Lean In

9. Connecting You’re a person, your patient is a person - you almost certainly have thoughts/worries/fears about death and dying, as do they - you almost certainly have experienced loss, as they now are This is your foundational qualification for discussing death and dying with others; your “admission ticket” to the conversation; your credentials for having a role Your profession provides an added layer of technical information and skill, but without connecting as a person you cannot effectively provide support to a patient facing death and their family

10. If you were in their position, how might you react or behave? What might you be hoping for? Concerned about? What is their understanding of what is happening? How has their experience of the illness and its treatments impacted them and their family? What are their concerns, expectations, priorities? This does not mean you try to take on that person's suffering as your own, or can truly understand their burdens 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)

11. Many (most) challenges and concerns in palliative care are quite predictable

12. Predictable Challenges As Death Nears In Progressive Terminal Illness Functional decline – 100% Compromised oral intake (food, fluids, meds) –100% - Families concerned about this – pretty much 100% Congestion: reported as high as 92% Dyspnea: 80% + as death nears Delirium: 80% + When these issues arise at end-of-life, things haven’t “gone wrong”… they have gone as they are inclined to

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

14. Starting Conversations Anticipate Concerns – Acknowledge, Normalize, Validate Seek permission – not everyone in the room may be ready for frank discussion of death and dying “You might be wondering why your Mom is (more sleepy; weaker; not eating/drinking) – we’ve noticed that too, and thought it would be good to talk about these changes…” “Many families in such situations wonder about… “Sometimes when things start to change, families have concerns about…”

15. 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

16. 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

17. 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

18. “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?”

20. 20 “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” 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?”

21. 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

22. 22 “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

23. 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?”

24. Life and Death Decisions? Families may feel as though they are being asked to decide whether their loved one lives or dies – i.e. to choose life/death It may help to remind them that the underlying illness itself is not survivable – no decision they make 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.”

25. The Temptation of Treatability In general, people do not die of the underlying life- limiting condition, but from its complications – pneumonia; sepsis; bleeding; organ failure; etc. Families may say “We know he is going to die from his cancer, but we can’t just let him die from pneumonia – people don’t die from pneumonia these days” You can find yourself being drawn by the “temptation of treatability” into a course of micromanaging the dying process that would have otherwise unfolded naturally, predictably, and usually calmly

27. 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.

28. 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

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

30. 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

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

32. 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

33. 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!

34. 5 Key Take-Home Points 1. It’s all about connecting – one person to another 2. Predictable issues lend themselves to proactive communication – most palliative issues and concerns can be anticipated 3. The biggest hurdle in having difficult conversations tends to be in starting them 4. A framework can guide responses to difficult questions – e.g. about prognosis 5. The approach to discussing options (and non-options) with Substitute Decision Makers has a huge impact on the outcomes of such conversations and on the burden experienced by SDMs