Presentation on theme: "Communication and Decision Making in Palliative Care Professor and Section Head, Palliative Medicine, University of Manitoba Medical Director, WRHA Adult."— Presentation transcript:
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
The presenter has no conflicts of interest to disclose
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
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
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2 7 month old infant with severe anoxic brain injury due to balloon aspiration life-sustaining treatment in the PICU withdrawn, was being transferred ward for palliative care as he was being wheeled out of his ICU room in his bed, his father noticed that he no longer had an intravenous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?
Case 3 65 yo man with esophageal CA, extensive mets to liver, cachexia difficulty swallowing Asking about a feeding tube
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
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: Im wondering what made you ask this today? Sometimes people in these situations wonder about… Observe/assess response, titrate accordingly
Setting The Stage In person Sitting down Minimize distractions Family / friend possibly present 15
Silence Is Not Golden Dont 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
Be Clear 17 Make sure youre both talking about the same thing Theres a tendency to use euphemisms and vague terms in dealing with difficult matters… this can lead to confusion… e.g.: How long have I got? Am I going to get better? The single biggest problem in communication is the illusion that it has taken place. George Bernard Shaw
Titrate information with measured honesty Check Response: Observed & Expressed The response of the patient determines the nature & pace of the sharing of information Feedback Loop
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)
Macro-Culture Experiences Ethnicity, Faith, Values of a Community & Micro-Culture How does this family work?
Families Wishing To Filter/Block Information Dont simply respond with Its their right to know and dive in. Rarely an emergent need to share information Explore reasons / concerns – the micro-culture of the family Perhaps negotiate an in their time, in their manner resolution 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 dont 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?
1.Acknowledge/Validate and Normalize Thats 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? Im 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
23 How long have I got? DISCUSSING PROGNOSIS 1.Confirm what is being asked 2.Acknowledge / validate / normalize 3.Check if theres a reason that this is has come up at this time 4.Explore frame of reference (understanding of illness, what they are aware of being told) 5.Tell them that it would be helpful to you in answering the question if they could describe how the last month or so has been for them 6.How would they answer that question themselves? 7.Answer the question
First, you need to know that were 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 youre aware of, it wont be years. This brings the time frame into the weeks-to-months range. From what weve seen in the way things are changing, Im feeling that it might be as short as a couple of weeks, or perhaps up to a month or two
26 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?
First, lets talk about what you should not expect. You should not expect: – pain that cant be controlled. – breathing troubles that cant be controlled. –going crazy or losing your mind
If any of those problems come up, I will make sure that youre comfortable and calm, even if it means that with the medications that we use youll be sleeping most of the time, or possibly all of the time. Do you understand that? Is that approach OK with you?
You'll find that your energy will be less, as youve likely noticed in the last while. Youll want to spend more of the day resting, and there will be a point where youll be resting (sleeping) most or all of the day.
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 wont let that happen.
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!
Helping Families At The Bedside physical changes – skin colour; breathing patterns time alone with patient can they hear us? how do you know theyre comfortable? missed the death
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
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: 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? dont want to miss being there at time of death how long can this go on? what will things look like?
Preemptive Discussions 38 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?
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?
Patient/Family Understanding and Expectations Health Care Teams Assessment and Expectations What if…?
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?
Prolong Suffering Prolong Suffering Let Die Let Die The Unbearable Choice
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?
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.
ComfortComfort MedicalMedical ResuscitationResuscitation The three ACP levels are simply starting points for conversations about goals of care when a change occurs
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
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
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