Communication in Pediatric Palliative Care Mike Harlos MD, CCFP, FCFP Professor and Section Head, Palliative Medicine, University of Manitoba Medical Director, WRHA Adult and Pediatric Palliative Care Erin Shepherd RN, MN Clinical Nurse Specialist, WRHA Pediatric Palliative Care

The presenters have no conflicts of interest to disclose

Objectives Review fundamental components of effective communication with children and their families Explore boundary issues when addressing difficult scenarios in palliative care Discuss potential barriers to effective communication in palliative care Consider an approaches/framework to challenging communication issues

http://palliative.info

Parents’ Priorities For Pediatric Palliative Care Meyer EC, Burns JP, Griffith JL, Truog RD. Parental perspectives on end-of-life care in the pediatric intensive care unit. Crit Care Med 2002; 30(1):226-231. n = 56 parents

Case 1 7 month old infant with severe anoxic brain injury due to balloon aspiration life-sustaining treatment in the PICU withdrawn, was being transferred ward for palliative care as he was being wheeled out of his ICU room in his bed, his father noticed that he no longer had an intravenous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 2 18 yo female with CF, in her first hospitalization on the adult wards at HSC resp. failure, on BiPAP, prognosis 1-2 days clinical team called for help with discussing goals of care, as she seemed to want CPR but no invasive ventilation

Case 3 17 yo with widely metastatic Ewing’s sarcoma ward team would like goals of care addressed, particularly around CPR she does not want to talk about anything potentially related to dying

Treating Pain Children Titrating Truth In Communicating Titrating Opioids In Treating Pain Children Titrating Truth In Communicating With Children “Look Up Recommended Dose”: Consider developmental understanding of issue Ask parents & health care team what child understands Check with parents if/how they would like information shared Look Up Recommended Dose Start conservatively, usually with lower end of recommended range unless severity of distress dictates otherwise Start Conservatively: I’m wondering what made you ask this today? Can you yell me what you understand is going on? Observe/assess response, titrate accordingly Observe/assess response, titrate accordingly

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 Micro-Culture Ethnicity, a Community How does this family work? a Community Faith, Experiences Values of &

Talking about Death with Children Who Have Severe Malignant Disease Kreicbergs et al NEJM 2004; 351(12):1175-1186. Children < 17 yrs with malignancy Dx between 1992 and 1997 n = 429 parents (76% of eligible) of 368 children Questionnaire 4 – 9 yrs after child’s death after initial telephone contact, exploring parents’ perceptions of their child’s awareness of dying and communication with their child about dying

Talking about Death with Children … ctd Kreicbergs et al NEJM 2004; 351(12):1175-1186. Did you talk about death with your child at any time? Yes n = 147 (34 %) No n = 282 (66 %) Do you regret having done so? Do you regret not having done so? No parents regretted having talked with their children about dying Yes No Overall: 27% 73% Identify and facilitate communication Sensed Child Aware Of Dying: 47% 53% Did Not Sense Child Aware: 13% 87%

Communicating with seriously ill children Sourkes, Barbara; “Armfuls of Time” “To shield the child from the truth may only heighten anxiety and cause the child to feel isolated, lonely, and unsure about whom to trust.” “While the diagnosis is an event in time, ‘telling’ is a process over time” “How to inform the child of the diagnosis should be decided by the parents in consultation with the staff…” “Fluidity is the hallmark of the child’s response to diagnosis”

Communicating ctd Sourkes, Barbara; “Armfuls of Time” “A general guideline is to follow the child’s lead: he or she questions facts or implications only when ready, and that readiness must be respected.” “It is the adult’s responsibility to clarify the precise intent of any question and then to proceed with a step-by-step response, thereby granting the child options at each juncture” “Offering less information with the explicit invitation to ask for more affords a safety gauge of control for the child.”

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 “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?” 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

DISCUSSING PROGNOSIS “How long does he have?” Confirm what is being asked Acknowledge / validate / normalize Check if there’s a reason that this is has come up at this time Explore “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 How would they answer that question themselves? Answer the question

“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 his 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”

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

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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? don’t want to miss being there at time of death how long can this go on? what will things look like?

Preemptive Discussions “You might be wondering…” “At some point soon you will likely wonder about…” “Many parents in such situations think about whether…

Patient/Family Understanding and Expectations Health Care Team’s What if…? Patient/Family Understanding and Expectations Health Care Team’s Assessment and Expectations

Starting the Conversation – Sample Scripts “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?”

“If Your Child Could Tell Us…” when an older child is dying but too ill to participate in discussions, parents may have a sense of how that child would guide care if he/she could rather than asking family what they would want done for their child, consider asking what their child would want This 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 Family 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. 32

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. 33

Life and Death Decisions? when asked about common end-of-life choices, parents may feel as though they are being asked to decide whether their child 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.” 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. 34

Resuscitation Medical Comfort The three ACP levels are simply starting points for conversations about goals of care when a change occurs Comfort Medical Resuscitation 35

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 care Those 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 care 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 When 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 care Virtually 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 care Uncertainty about the potential to achieve physiological goals, or the hoped-for goals are not physiological/clinical but are experiential The 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. 36

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 Uncertainty RE: Outcome Consider therapeutic trial, with: clearly-defined target outcomes agreed-upon time frame plan of action if ineffective Goals achievable and consistent with standard of medical care Proceed if desired by patient or substitute decision maker Interventions 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 them An agreed-upon time frame during which to assess the effectiveness A 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. 37

Revisiting The Cases Case 1: 7 month old infant with severe anoxic brain injury, question about hydration Case 2: 18 yo female with CF Case 3: 17 yo with widely metastatic Ewing’s sarcoma

Additional Reference Material

Children’s Conceptions of Death Kenyon BL; Omega: Journal of Death and Dying 2001; 43(1) 63–91 The most widely studied components of the concept of death are: Non-functionality: the understanding that all life-sustaining functions cease with death Irreversibility: the understanding that death is final and, once dead, a person cannot become alive again Universality: understanding that death is inevitable to living things and that all living things die Causality: refers to understanding what causes death Personal mortality: related to universality but reflective of the deeper understanding not only that all living things die, but that “I will die.” (sometimes referred to in different terms (e.g., cessation for non-functionality, inevitability for universality)

Children’s Conceptions of Death Kenyon BL; Omega: Journal of Death and Dying 2001; 43(1) 63–91 In general, it appears that universality followed by irreversibility emerge relatively early, with non-functionality and causality understood later children understand the cessation of external events (like movement) before internal events (such as thinking), after death Speece and Brent (1992) – studied children from kindergarten to 3rd grade: Non-functionality - difficult for children to master. 90 percent of the sample understood the cessation of motion only 65 percent of the sample understood that less obvious properties, like sentience (thinking, feeling) and perception (hearing, seeing) cease with death

Children’s Conceptions of Death Kenyon BL; Omega: Journal of Death and Dying 2001; 43(1) 63–91 children understand death as a changed state by about 3 yo children understand that death is universal by about 5 – 6 yo; understand what causes death slightly later although an understanding of personal mortality has been demonstrated by children as young as 4 yo, it does not reliably emerge until 8 - 9 yo. current measures do not detect a complete understanding of universality, irreversibility, non-functionality, and personal mortality until about ten years of age

of Incomplete Understanding Implications of Incomplete Elements of Complete Developmental Understanding of Death Himelstein et al; NEJM 2004;350:1752-62 Concept of Death Questions Suggestive of Incomplete Understanding Implications of Incomplete Understanding Irreversibility (dead things will not live again) How long do you stay dead? When is my (dead pet) coming back? Can I "un-dead" someone? Can you get alive again when you are dead? Prevents detachment of personal ties, the first step in mourning Finality or nonfunctionality (all life-defining functions end at death) What do you do when you are dead? Can you see when you are dead? How do you eat underground? Do dead people get sad? Preoccupation with the potential for physical suffering of the dead person Universality (all living things die) Does everyone die? Do children die? Do I have to die? When will I die? May view death as punishment for actions or thoughts of child or the dead person May lead to guilt and shame Causality (realistic understanding of the causes of death) Why do people die? Do people die because they are bad? Why did my (pet) die? Can I wish someone dead? May cause excessive guilt

Spiritual Development Development of Death Concepts and Spirituality in Children Himelstein et al; NEJM 2004;350:1752-62 Age Range Characteristics Predominant Concepts of Death Spiritual Development Interventions 0 – 2 yr Has sensory and motor relationship with environment Has limited language skills Achieves object permanence May sense that something is wrong None Faith reflects trust and hope in others Need for sense of self-worth and love Provide maximal physical comfort, familiar persons and transitional objects (favorite toys), and consistency Use simple physical communication >2 – 6 yr Uses magical and animistic thinking Is egocentric Thinking is irreversible Engages in symbolic play Developing language skills Believes death is temporary and reversible, like sleep Does not personalize death Believes death can be caused by thoughts Faith is magical and imaginative Participation in ritual becomes important Need for courage Minimize separation from parents Correct perceptions of illness as punishment Evaluate for sense of guilt and assuage if present Use precise language (dying, dead)

Spiritual Development Development of Death Concepts and Spirituality in Children …ctd Himelstein et al; NEJM 2004;350:1752-62 Age Range Characteristics Predominant Concepts of Death Spiritual Development Interventions >6 – 12 yr Has concrete thoughts Development of adult concepts of death Understands that death can be personal Interested in physiology and details of death Faith concerns right and wrong May accept external interpretations as the truth Connects ritual with personal identity Evaluate child’s fears of abandonment Be truthful Provide concrete details if requested Support child's efforts to achieve control and mastery Maintain access to peers Allow child to participate in decision making >12 – 18 yr Generality of thinking Reality becomes objective Capable of self-reflection Body image and self-esteem paramount Explores nonphysical explanations of death Begins to accept internal interpretations as the truth Evolution of relationship with God or higher power Searches for meaning, purpose, hope, and value of life Reinforce child's self-esteem Allow child to express strong feelings Allow child privacy Promote child's independence Promote access to peers