1. 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 helath care options To explore an approach to health care decision- making

4. http://palliative.info

7. Case 1 35 yo woman with metastatic CA cervix ongoing bleeding, requiring 1-2 transfusions per week transferred to palliative care unit for comfort care after her health care team decided that no further transfusions would be given, as they were futile

8. Case 2 7 month old infant with severe anoxic brain injury due to balloon aspiration life-sustaining treatment in the PICU withdrawn, was being transferred ward for palliative care as he was being wheeled out of his ICU room in his bed, his father noticed that he no longer had an intravenous line Where is his IV line? How is he going to get fluids?

9. Case 3 65 yo man with esophageal CA, extensive mets to liver, cachexia difficulty swallowing Asking about a feeding tube

10. Case 4 75 yo woman with widely metastatic CA lung brought in near death to ED by ambulance unresponsive, mottled, resps congested and irregular, pulse rapid and barely palpable IV started, fluids and cefuroxime administered for presumed pneumonia 2 daughters… both realize mom is dying and do not want CPR, however: one wants all meds and fluids discontinued one wants possible pneumonia treated and hydration provided… if this is not done, she will never speak to her sister again

11. Anatomy of Decision Making Context forms the background on which decisions are considered… past experiences, present circumstances, anticipated developments Information is the foundation on which decisions are made Clinical information – facts, numbers; the what Values / belief systems / ethical framework; the who… this includes is the patient/family and the health care team Goals are the focus of decisions – dialogue around health care decision (or any decision, for that matter) should be framed in terms of the hoped-for goals Communication is the means by which information is shared and discussion of goals takes place

14. Preemptive Decisions 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: food/fluid intake sleeping too much are medications causing the decline? how do we know he/she is comfortable? can he/she hear us? dont want to miss being there at time of death how long can this go on? what will things look like?

15. functional decline occurs food/fluid intake decr. oral medication route lost symptoms develop: dyspnea, congestion, delirium family will need support & information

16. Some Problems Are Easily Predictable

17. Preemptive Discussions 17 You might be wondering… Or At some point soon you will likely wonder about… Food / fluid intake Meds or illness to blame for being weaker / tired / sleepy /dying?

19. Introducing the Topic One of the biggest barriers to difficult conversations is how to start them Health care professionals may avoid such conversations, not wanting to frighten the patient/family or lead them to think there is an ominous problem that they are not being open about Discussions around goals of care can be introduced as an important and normal component of any relationship between patients and their health care team

20. Starting the Conversation – Sample Scripts 1 Id like to talk to you about how things are going with your condition, and about some of the treatments that were doing or might be available. It would be very helpful for us to know your understanding of how things are with your health, and to know what is important to you in your care… what your hopes and expectations are, and what you are concerned about. Can we talk about that now? (assuming the answer is yes) Many people who are living with an illness such as yours have thought about what they would want done if [fill in the scenario] were to happen, and how they would want their health care team to approach that. Have you thought about this for yourself?

21. Patient/Family Understanding and Expectations Health Care Teams Assessment and Expectations What if…?

22. Starting the Conversation – Sample Scripts 2 I know its been a difficult time recently, with a lot happening. I realize youre hoping that whats being done will turn this around, and things will start to improve… were 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 scarywhat-if thoughts, such as what if the treatments dont have the effect that we hoped? Is this something youve experienced? Can we talk about that now?

23. The Unbearable Choice Usually in substituted judgment scenarios The patient is brought into the decision abstractly Misplaced burden of decision Eg: Person imminently dying from pneumonia complicating CA lung; unresponsive Family may be presented with option of trying to treat… which they are told will prolong suffering… or letting nature take its course, in which case he will soon die

24. Prolong Suffering Prolong Suffering Let Die Let Die

25. 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?

27. 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 youre being asked to make some very difficult choices about care, and it must feel that youre 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.

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

29. Goal-Focused Approach To Decision Making Regarding effectiveness in achieving its goals, there are 3 main categories of potential interventions: 1. Those that will work: Essentially certain to be effective in achieving intended physiological goals (as determined by the health care team) or experiential goals (as determined by the patient) goals, and consistent with standard of medical care 2. Those that wont work: Virtually certain to be ineffective in achieving intended physiological goals (such as CPR in the context of relentless and progressive multisystem failure) or experiential goals (such as helping someone feel stronger, more energetic), or inconsistent with standard of medical care 3. Those that might work (or might not): Uncertainty about the potential to achieve physiological goals, or the hoped-for goals are not physiological/clinical but are experiential

30. Goal-Focused Approach To Decisions Goals unachievable, 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 to a setting/providers willing to pursue the intervention Goals unachievable, 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 to a setting/providers willing to pursue the intervention 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

31. Revisiting The Cases Case 1:35 yo woman with metastatic CA cervix, question about the role of transfusions Case 2:7 month old infant with severe anoxic brain injury, question about hydration Case 3:65 yo man with esophageal CA, wondering about feeding tube Case 4:75 yo woman with widely metastatic CA lung, conflict between daughters