4 ObjectivesReview fundamental components of effective communication with patients and their familiesDiscuss potential barriers to effective communication in palliative careConsider an approaches/framework to challenging communication issuesReview an approach to decision making in palliative care
9 Setting The Stage In person Sitting down Minimize distractions Family / friend possibly present
10 Silence Is Not GoldenDon’t assume that the absence of question reflects an absence of concernsUpon 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
11 Be Clear“The single biggest problem in communication is the illusion that it has taken place.”George Bernard ShawMake sure you’re both talking about the same thingThere’s 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?”
12 Titrate information with “measured honesty” “Feedback Loop”Check Response:Observed & ExpressedThe response of the patient determines the nature & pace of the sharing of information
13 Macro-Culture Micro-Culture Ethnicity, a Community How does this familywork?a CommunityFaith,ExperiencesValues of&
14 When Families Wish To Filter Or Block Information Don’t simply respond with “It’s their right to know” and dive in.Rarely an emergent need to share informationExplore reasons / concerns – the “micro-culture” of the familyPerhaps negotiate an “in their time, in their manner” resolutionUltimately, 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?”
15 ConnectingA foundational component of effective communication is to connect / engage with that person… i.e. try to understand what their experience might beIf 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 ownMust 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)
20 Introducing the TopicOne of the biggest barriers to difficult conversations is how to start themHealth 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 aboutDiscussions around goals of care can be introduced as an important and normal component of any relationship between patients and their health care teamOne of the most challenging aspects to conversations around sensitive and difficult topics is how to start them. How do you begin such serious conversations without upsetting people, or taking away hope? We may find ourselves reluctant to be the ones starting the conversation, as it may not feel that there is a natural starting off point, or a comfortable place to begin.A helpful way to approach these discussions is to introduce them as a normal component of the relationship between a health care provider and the patient and/or family, emphasizing that it is important that we are aware of their understanding of their condition, and of their goals and values regarding treatments.
21 Starting the Conversation – Sample Scripts 1 “I’d like to talk to you about how things are going with your condition, and about some of the treatments that we’re 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?”These sample scripts may be helpful in initiating discussions about ACP.
22 Patient/Family Understanding and Expectations Health Care Team’s Whatif…?Patient/FamilyUnderstanding andExpectationsHealth Care Team’sAssessment andExpectations
23 Starting the Conversation – Sample Scripts 2 “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?”
24 Responding To Difficult Questions 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…”Is there a reason this has come up?“I’m wondering if something has come up that prompted you to ask this?”Gently explore their thoughts/understanding“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?”“It would help me to have a feel for what your understanding is of your condition, and what you might expect”Respond, if possible and appropriateIf you feel unable to provide a satisfactory reply, then be honest about that and indicate how you will help them explore that
26 DISCUSSING PROGNOSIS “How long have I got?” Confirm what is being askedAcknowledge / validate / normalizeCheck if there’s a reason that this is has come up at this timeExplore “frame of reference” (understanding of illness, what they are aware of being told)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 themHow would they answer that question themselves?Answer the question
27 “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”
29 “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?”
30 First, let’s talk about what you should not expect. pain that can’t be controlled.breathing troubles that can’t be controlled.“going crazy” or “losing your mind”
31 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?
32 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.
33 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.
34 Day 1 Day 2 Day 3 Final The Perception of the “Sudden Change” When reserves are depleted, the change seems sudden and unforeseen.However, the changes had been happening.That was fast!Melting ice = diminishing reservesDay 1Day 2Day 3Final
35 Helping Families At The Bedside: Physical Changes physical changes of dying can be upsetting to those at the bedside:skin colour – cyanosis, mottlingbreathing patterns and ratemuscles used in breathingreflect inescapable physiological changes occurring in the dying process.may be comforting for families to distinguish between who their loved one is - the person to whom they are so connected in thought and spirit - versus the physical changes that are happening to their loved one's body.
36 Helping Families At The Bedside: Time Alone With The Patient family may arrive when the patient will no longer recover consciousness; they have missed the chance to say things they had wanted toindividuals may wish for time alone with the patient, but not feel comfortable asking relatives to leavestaff may have a role in raising this possibility, and suggesting they explore this as a family
37 Can They Hear Us?The question of “can they still hear us?” frequently arises regarding unconscious patients nearing death … of course it’s not possible to know this, however:Hearing is a resilient sense, as evidenced by its potential to endure into the early phase of general anesthesiaHearing vs. an awareness of presence of family… restless, minimally alert patients often settle when family are presentIn our behaviour at the bedside we should assume that some nature of hearing/awareness/connection is maintained… may influence nature of bedside conversations3737
38 Helping Families At The Bedside: Missed The Death some family members will miss being present at the time of deathconsider discussing the meaningfulness of their connection in thought & spirit vs physical proximitywhether they were at the bedside, or had stepped out of the room for a much needed break, or were in fact in a different country, their connection in spirit/heart/soul was not diminished by physical distance.
40 The Importance Of Context The decision about how to approach a new problem such as infection or bleeding may depend on what is happening with the illness in general; i.e. recent, present, and anticipated:Functional statusCognitive functionQuality of lifePresent CircumstancesRecentExperiencesExpectationsAdvance Care Planning may need to accommodate for having to assess the context at the time of the decision
41 The Illusion of ChoicePatients / families sometimes asked to make terribly difficult decisions about non- optionsi.e. there will be the same outcome regardless of which option is chosen.
43 The Unbearable Choice Usually in substituted judgment scenarios “Misplaced” burden of decisionEg:Person imminently dying from pneumonia complicating CA lung; unresponsiveFamily 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
45 Helping Family And Other Substitute Decision Makers Rather than asking family what they would want done for their loved one, ask what their loved one would want for themselves if they were able to sayThis off-loads family of a very difficult responsibility, by placing the ownership of the decision where it should be… with the patient.The family is the messenger of the patient’s wishes, through their intimate knowledge of him/her. They are merely conveying what they feel the patient would say rather than deciding about their careFamily and other substitute decision makers can find it very burdensome to be asked what they would like done for their loved one. By re-phrasing such questions such that the family is asked how the patient would guide care if able to do so, the burden of such decisions is redirected back to the patient; the family is acting as a messenger of the patient’s wishes. Often families will indicate that the patient would want comfort focused care only.This approach to off-loading the family of the direct responsibility for difficult health care choices can be very helpful.45
46 Example…“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?”Here are sample scripts of to help off-load families of having to decide what they would want for their loved one, but rather what he or she would want.46
47 Helping Family And Other Substitute Decision Makers In situations where death will be an inescapable outcome, family may nonetheless feel that their choices about care are life-and-death decisions (treating infections, hydrating, tube feeding, etc.)It may be helpful to say something such as:“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 are asking for guidance about how we can ensure that we provide the kind of care that he would have wanted at this time.”Many of the choices presented to families in the context of end-of-life circumstances can result in them feeling as though they are deciding whether or not there loved one lives or dies. It can be helpful to reaffirm that the underlying condition is not survivable, and that none of the choices that they make can change that… they are being asked for input that will help make sure that the care provided is consistent with how their loved one would have guided it, while ensuring that comfort is addressed.Such scenarios can sometimes be described as the illness being a play whose script has been written and which cannot be changed… we are the stage hands whose role is to ensure that it unfolds with as much comfort and dignity for the patient as possible.47
48 An Approach To Decision Making The health care team has a key role in providing information related to technical or medical issues, and physiological outcomes…reviewing/explaining details about the condition, test results, or helping explore treatment optionsindicating when a hoped-for outcome or treatment option is not medically possiblePatient/family must have a central role in considerations relating to value/belief systems (such as whether life is worth living with a certain disability) or to experiential outcomes (such as energy, well-being, quality of life)Health care providers have an important role in providing clinical information regarding tests, treatments, expected outcomes to patients and families considering health care choices. These are typically measurable physiological parameters or outcomes, such as vital signs or changes in laboratory or imaging results, which are objectively assessed.Issues such as quality of life, or the value of survival for a limited length of time or with a specific disability, are subjective and must be considered with input from the person who will be experiencing them. The patient and family are the experts in matters that relate to their values and belief systems or their experience of life, and consideration of such matters requires their input.48
49 Goal-Focused Approach To Decision Making Regarding effectiveness in achieving its goals, there are 3 main categories of potential interventions: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 careThose that won’t 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 careThose 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 experientialWhen an intervention (such as a blood transfusion, a feeding tube, treating a pneumonia at end of life) is being considered, it will generally fall into one of three categories:Essentially certain to be effective in achieving intended physiological goals, and consistent with standard of medical careVirtually certain to be ineffective in achieving intended physiological goals (such as CPR in the context of relentless and progressive multisystem failure) or inconsistent with standard of medical careUncertainty about the potential to achieve physiological goals, or the hoped-for goals are not physiological/clinical but are experientialThe approach to considering an intervention will depend on the goals and the likelihood of achieving those goals, and on the standard of care being considered.49
50 Goal-Focused Approach To Decisions Goals unachievable, or inconsistent with standard of medical careDiscuss; explain that the intervention will not be offered or attempted.If needed, provide a process for conflict resolution:Mediated discussion2nd medical opinionEthics consultationTransfer of care to a setting/providers willing to pursue the interventionUncertainty RE: OutcomeConsider therapeutic trial, with:clearly-defined target outcomesagreed-upon time frameplan of action if ineffectiveGoals achievable and consistent with standard of medical careProceed if desired by patient or substitute decision makerInterventions whose goals are clearly achievable and consistent with an accepted standard of medical care will generally be pursued if desired by the patient or substitute decision maker.Interventions whose goals cannot possibly be achieved (such as CPR in the context of multisystem failure, where the heart ultimately stops beating only because of the overwhelming nature of the patient’s overall condition), or which do not meet an accepted standard of medical care (such as highly toxic unproven therapies) should not be attempted, and the reasons for this explained to the patient and family. If needed, a process for conflict resolution can be offered such as mediated discussion, 2nd medical opinions, and ethics consultation.There is often uncertainty about whether the goals of an intervention can possibly be achieved. This is particularly the case when the hoped-for outcomes are subjective and experiential, such as whether tube feeding will result in improved energy and well-being in a patient with advanced esophageal CA and obstructive symptoms, or whether transfusing a patient with moderate anemia in the terminal phase of leukemia will improve energy and dyspnea. In such circumstances, it is reasonable to undertake a trial of the intervention, to see if it has the hoped-for effects. In such therapeutic trials, it is important to have the three following components:Clearly-defined target outcomes, and means to assess themAn agreed-upon time frame during which to assess the effectivenessA plan of action in the event that the intervention is not effective.For example, in a patient with advanced metastatic esophageal CA and obstructive symptoms, it may be difficult to know how much of the weakness and functional decline is due to the overall effect of the illness vs. the nutritional compromise caused by the obstructive symptoms. In such situations, there may be a decision to undertake a trial of tube feeding for two weeks, with the target outcomes being improved energy, well-being, and functional status. Note that some of these outcomes will require the patient’s assessment, and to some there can be objective assessment of functional status. If the treatment is not effective, consideration may be given to withdrawing the feeding tube if that is the consensus decided upon prior to the trial.50