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• life-sustaining treatment in the PICU withdrawn,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
Titrating Opioids In
Treating Pain Children
Look Up Recommended Dose
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
Start conservatively, usually with
lower end of recommended range
unless severity of distress dictates
otherwise
Observe/assess response, titrate
accordingly
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
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
How does this family
work?
&
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?
n = 147
(34 %)
n = 282
No (66 %)
Yes
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%
Sensed Child Aware Of Dying:
47%
53%
Did Not Sense Child Aware:
13%
87%
Identify and facilitate communication
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
1. 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…”
2. Is there a reason this has come up?
“I’m 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
DISCUSSING PROGNOSIS
“How long does he have?”
1. Confirm what is being asked
2. Acknowledge / validate / normalize
3. Check if there’s 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
6. How would they answer that question themselves?
7. Answer the question
22
“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
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…
29
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
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?”
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-anddeath 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.”
The three ACP levels are simply starting
points for conversations about goals of care
when a change occurs
Comfort
Medical
Resuscitation
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 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
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
Uncertainty RE: Outcome
Consider therapeutic trial, with:
1. clearly-defined target
outcomes
2. agreed-upon time frame
3. plan of action if ineffective
Goals achievable and
consistent with standard of
medical care
• Proceed if desired by patient
or substitute decision maker
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:
1. Non-functionality: the understanding that all life-sustaining
functions cease with death
2. Irreversibility: the understanding that death is final and, once
dead, a person cannot become alive again
3. Universality: understanding that death is inevitable to living
things and that all living things die
4. Causality: refers to understanding what causes death
5. 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 nonfunctionality, 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, nonfunctionality, and personal mortality until about ten
years of age
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
• 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
Causality (realistic
understanding of
the causes of
death)
Development of Death Concepts and Spirituality in Children
Himelstein et al; NEJM 2004;350:1752-62
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 selfworth 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)
Age
Range
Characteristics
Development of Death Concepts and Spirituality in Children
Himelstein et al; NEJM 2004;350:1752-62
…ctd
Age
Range
Characteristics
Predominant
Concepts of Death
>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 selfreflection
• Body image
and selfesteem
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
• Be truthful
• Allow child to participate in
decision making
Spiritual
Development
Interventions