1. 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

3. The presenters have no conflicts of interest to disclose

4. 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

8. 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):
n = 56 parents

11. 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life-sustaining treatment in the PICU withdrawn, was being transferred ward for palliative care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?”

12. 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

13. 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

14. 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

15. 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)

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

17. Talking about Death with Children Who Have Severe Malignant Disease
Kreicbergs et al NEJM 2004; 351(12):
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

18. Talking about Death with Children … ctd
Kreicbergs et al NEJM 2004; 351(12):
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%

19. 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”

20. 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.”

21. 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

22. 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

23. “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”

24. 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

25. Context 25

26. 26

28. 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?

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

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

31. 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?”

32. “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

33. 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

34. 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

35. 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

36. 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

37. 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

38. 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

39. Additional Reference Material

40. 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)

41. 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

42. 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 yo.
current measures do not detect a complete understanding of universality, irreversibility, non-functionality, and personal mortality until about ten years of age

43. of Incomplete Understanding Implications of Incomplete
Elements of Complete Developmental Understanding of Death
Himelstein et al; NEJM 2004;350:
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

44. Spiritual Development
Development of Death Concepts and Spirituality in Children
Himelstein et al; NEJM 2004;350:
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)

45. Spiritual Development
Development of Death Concepts and Spirituality in Children
…ctd
Himelstein et al; NEJM 2004;350:
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