The document discusses supporting children and families during end of life and palliative care. It covers stressors in critical care environments, providing support for dying children, adolescents, parents, and siblings. It discusses facilitating communication and decision making. Child life specialists can help children understand illness, cope with procedures, express feelings, and say goodbye. The document also discusses supporting grieving children and families, considering developmental, cultural, and religious factors. Child life specialists develop skills in areas like play facilitation, communication, group work, self-reflection to provide bereavement support.

1. End of Life
and
Palliative Care
By: Jessica Hill and Aly Satisky

2. TABLE OF CONTENTS
Handbook: Chapter 12
Child Life Interventions in
Critical Care at the End of
Life
Rubin, Chapter 11
Child-Centered Play Therapy
with Children Who are Dying
Case Study Activity
Participating in Case Studies
from the textbook
01
03
04
05
Handbook: Chapter 13
Working with Grieving
Children and Families
02
Rubin, Chapter 12
It’s all about the Living: Play
Based Experiences with
Children Facing End of Life

3. TESTIMONIAL
People often ask me “How do you do your job?”
or “Why would you want to do that?” While
people always have questioned how I could
work with sick kids, when I now tell them that I
work with dying kids, their reaction is even
stronger and most often a conversation stopper.
However, if I can be that person who puts a
smile on a child’s face, whether they are in the
hospital undergoing a procedure or dying at
home, that is all that matters. Being a child life
specialist in the hospice setting allows me to
help make this unimaginable time just a bit
more joyful and make the end a little bit easier.
That, I tell people, is why I chose child life and
why I love this work.
By Kristen Goodhue, MS, CCLS, Children’s Program Coordinator for Care Dimensions
From a child life specialist working in end of life

4. Handbook: Chapter 12
01
Child Life Interventions in Critical Care at the End of Life
Important Topics Covered:
Stressors, Support, and Palliative Care

5. 01
Parents
Parental Stressors Within
the Environment
Siblings
Sibling Stressors
STRESSORS
Patients
Stressors for the
Pediatric Patient
02 03
Regardless of the circumstances that are presented, as well as the coping
styles and experiences unique to each child and family, the critical care
environment places stress on the child, parent, and siblings. As a child life
specialist, we play an important role in helping families cope with the
complexity and stress filled environment during the time of end of life
and palliative care.

6. Environmental Stressors
● Sounds of monitors, alarms,
equipment
● Visual stimulation of equipment,
procedures, and lighting
● Observations of other patients
● Procedures and surgical
interventions conducted
at bedside
Parental Stressors
within the Environment
Studies have identified that parents experience various stressors in their
life, during the time of their child in critical care. These include:
01 02
03
04
05
Communication Stressors
Concerns about child’s
physical appearance,
behavior, and emotional
coping
Alterations or deprivations
in parenting role
Concerns about
well-being of other
children in family
● Too much or too little
information provided to parents
● Few opportunities to ask
questions
● Inability to interpret staff
behaviors
● Visiting Policies
● Participation in cares
● Inability to hold infant or
young child

7. Parental Stressors and How Parents
View Their Role in the Hospital:
A study was used in order to better understand the parental roles of a
critically ill child, as well how parents identify them and view them. (This
study was specifically used in the PICU)
Being Present
Being present and
participating in the child’s
care. Providing comfort,
talking with their child to
reassure and actively
engaging in cares.
Forming Trust
Forming a partnership of trust
with the PICU Team - sharing
their expertise about their child’s
cue and signs of discomfort;
feeling cared for themselves by
being offered comforts at the
bedside or respite.
Being Informed
Being informed of the child’s
progress and treatment plans
as the person who knows the
child-best. Knowing their child’s
status and understanding the
care being provided.

8. Stressors for the Pediatric
Patient
Physical Environment
Communication
Abilities & Techniques
Issues of Privacy
Medical & Emotional
Needs
Image Source: https://www.urmc.rochester.edu/childrens-hospital/child-life/for-students.aspx

9. Physical Environment
Communication
Abilities & Techniques
Issues of Privacy
Medical & Emotional
Needs
Placing patients in areas with
“less traffic”, using movable
screens, higher visibility is
important - (Important to
consider children that are
sedated, but still can hear
surrounding noises or
conversations).
Scheduling care taking activities
and therapies, developmental
care plan (maybe on hanging
dry erase board), and pacifier or
favorite blanket
Stressor Intervention
Soothing music, tape recordings
or parent’s voice singing or
reading, quilts places over
isolette, videos, and headphones
Mechanical Speaking aids,
communication boards,
computer programs, writing
assists, and hand/eye signals
(any speech tool)

10. Provide developmentally appropriate
explanations to convey disease related info.
Remind family members to include school
personnel for additional support
Provide group programming, specifically for
siblings in speciality units (ex. NICU)
Encourage phone calls, letter writing,
etc. (when siblings are present)
Facilitate discussion of feelings between child and
parents - when sibling is present
Include siblings in child life
programming
Support parents in meeting the needs of their
well-children
Sibling Stressors
Interventions →
Image Source:
https://www.themarkmakers.org/blog/2019/5/20/t45fpcoz75lpmql3oftiizeoo0k9f6

11. 01
Supporting the
Dying Child
Supporting the Parents
of a Dying Child
or Teen
SUPPORT
Supporting the
Dying Adolescent
02
03
Regardless of the circumstances that are presented, as well as the coping
styles and experiences unique to each child and family, the critical care
environment places stress on the child, parent, and siblings. As a child life
specialist, we play an important role in helping families cope with the
complexity and stress filled environment during the time of end of life
and palliative care.
04
Supporting
Siblings of a Dying
Child

12. The Dying Child & Ways to Support
Diagnostic or
Acute Phase
Chronic
Phase Terminal
Phase
The initial phase or pre-diagnosis or
diagnosis
Family may face feelings of stress that
are as significant as in the terminal
phase or time of death
How the family handles this first phase
may be indicative of their subsequent
fears, coping patterns and info-seeking
abilities
Realize the illness and
treatment will be a continuing
part of their family life
“Protracted and ill defined
phase”
Less supported by others and
isolated from social activities
When Attention shifts from
aggressive treatment to
palliative care - decisions
about quality of life and end
of life demonstrates the
realities of impending
death
Child Life Specialists help a child to understand the disease
itself and the implications of treatment.
Also, they may facilitate the learning of coping styles to
support the child through potentially painful procedures.
Involvement in child life activities helps the child ventilate
feelings and fears, while learning to integrate implications of
the illness into daily routines and relationships with family
members and peers.
Child life specialists may
help a child prepare for
death by preserving
self-concepts, maintaining
relationships with family
and friends, and expressing
feelings and fears.
Phases:
Child Life
Interventions
used to address
them:

13. WRITING
ACTIVITIES
letters, journaling,
poetry, or
email
CREATIVE
SELF
EXPRESSION
drawing,
painting, clay
etc.
CREATIVE
THINKING
audio and video
Recordings when
communicating is
no longer
available
EXPRESSIVE ART
a dying child or teen may find comfortable and developmentally
appropriate ways to say goodbye to important people in their lives
Image Sources: https://therapybyangelina.com/the-future-of-expressive-arts-therapy/ &
https://www.texaschildrens.org/departments/child-life/art-therapy

14. Guidelines for Interventions
with the Dying Child
1. Do not underestimate the child’s
capacity to understand
2. Create open communication, but do
not force it
3. Provide creative outlets for anger,
such as art
4. Follow the child’s lead
5. Be honest with the child about
impending death
6. Allow the child time to say good-byes
7. Permit the child to decide when he
or she wants to share the pain of grief
8. Remember the child may choose to
protect the parent (mutual pretense)
9. Help the Dying child to live
Image Source:
https://www.kristv.com/sponsored/triumph-over-kid-cancer/2019/04/01/the-5-contri
butions-of-dothatonething-to-pediatric-cancer-research/

15. 01
Dealing with
symptoms,
discomfort, pain,
and incapacities
Managing Stress
and examining
coping
Supporting the Dying Adolescent
Managing health
procedures & institutional
procedures
02
03
04
Dealing effectively
with
caregivers
05
Preserving
Self Concept
06
Preserving
relationships
with family &
friends
07
Ventilating
feelings & fears
08
Finding meaning in
life and death
09
Preparing for
Death and
Saying
Good-bye
The developmental tasks of healthy adolescents focus on becoming
independent, developing social networks, and preparing for careers
and, perhaps, long-term relationships.

16. 01
02
03
Sensitive &
compassionate
sharing of
information for
parent & child
Comforting the parents
Spiritual care
04
Support for
parental decision
making
05
Respect for the family’s
role in caring for their
child
06
Access to care
and resources
07
Including
bereavement
support
Supporting the Parents of a Dying Child
or Teen
Image Source: https://childrenswi.org/newshub/stories/emergency-department-suicide-screening
Seven dimensions of end-of-life care were
identified by parents as most important

17. Supporting Siblings of a Dying Child
2. Irreversibility →
3. Nonfunctionality→
1. Universality →
4. Casuality →
5. Noncorporeal
Continuation →
The understanding that all things
must eventually die
Once a physical body dies, it cannot
come alive again
The realization that when a living
thing dies, all aspects of a living
body cease to function
Includes both abstract and realistic
causes of death, or internal and external
factors
Refers to the belief in an afterlife
or some kind of communication
that goes on after the death of
the physical body
Image Source:
http://hannahdrewsphotography.com/2017/10/chicago-hospital-fresh-48-welcoming-louie/
In order to plan child life interventions for children facing the impending death of a brother or sister,
it is necessary to identify a child’s cognitive understanding of death. 5 components to consider:

18. Patient Involvement and End-of-Life
Decision Making
Helping the
patient achieve a
developmentally
appropriate
awareness of the
nature of his or her
condition
Telling the patient
what he or she can
expect with tests
and treatment
Making a clinical
assessment of the
patient’s
understanding of the
situation and the
factors influencing
how he or she is
responding
Soliciting an
expression of the
patient’s
willingness to
accept the
proposed care
● Importance of communicating information throughout diagnosis,
prognosis, evaluation and treatment.
● Comprehensible and compassionate communication
● Time for family to assimilate new information
● Opportunities for the adolescent to ask questions and respond to
information, both with parents and privately with physician
● Support during emotional and physical stress
● Clarification that advance directives may be modified or reversed at
any time
● Non Judgemental attitude demonstrated by all healthcare
professionals
The American Academy of Pediatrics (2016) states that assent requires:

19. Handbook: Chapter 13
02
Working with Grieving Children and Families
Important Topics Covered:
Grief Process, Child Life Specialist Competency Development,
& Bereavement Support Systems

20. Grief as a Family Process
“Grief is ultimately a family process, and it is within the family context that grief
can best be understood and support be facilitated”.
● Recognizing the family as a constant in the child’s
life
● Facilitating family and professional collaboration
● Sharing complete and unbiased information
between families & professionals in a supportive
manner
● Recognizing and honoring cultural diversity,
strengths, and individuality
● Encouraging and facilitating family-to-family
networking and support
● Ensuring that services are flexible, accessible, and
comprehensive in responding to diverse
family-identified needs
Image Source: https://www.dougy.org/about/our-story/mission-history

21. Parental Grief Sibling Grief
In helping siblings grieve, and to
help parents and others support
a child’s grief process, it is
important to understand the
effects of age and cognitive
development, cultural and
familial influences, and other
variables
A major challenge to resolving
parental grief is the assumption
that the child will outlive the
parent. “The radical
unnaturalness of a child’s death
forces parents into an initial state
of shock and denial” (Shapiro,
1994).

22. Individual Factors Death-Related Factors
Family/ Social/ Religious/
Cultural Factors
Age
Past coping/adjustment
Global Assessment of
functioning DSM-IV-TR, Axis V
Medical History
Past experience with death &
loss
Type of Death
Contact with the Deceased
Expression of “good-bye”
Relationship to Deceased
Grief reactions
Nuclear Family
Extended Family
School
Peers
Religious Affiliation
Cultural Affiliation
Child Life Specialists
can offer guidelines &
suggestions to parents and
others who may be in a
position to support a
grieving child, such as
extended family members,
teacher and clergy

23. TASKS OF GRIEVING→
01 02 03
04 05 06
Understanding &
Acknowledging the
reality of the death
Grieving or “feeling the
feelings” associated
with the loss
Commemorating or
keeping alive the
memory of the loved
one
Adjusting to a life from
which the deceased is
missing; developing a
new self-identity based
on life without the
loved one
Relating the
experience of the loss
to a context of
meaning
Going on
(going on with fun
activities, developing
loving relationships with
others - not forgetting
the person who is
gone).
Tasks of grieving have been used in more recent conceptualizations of
bereavement and in the goals of intervention, both for adults and for children.

24. Cultural & Religious Influences
How Individuals, families, and groups mourn - what
they believe, feel, and do- varies widely from person to
person, family to family, and, certainly,
culture-to-culture.
A Hmong funeral may last up to
ten days or more. Customs include
bathing, dressing, the sacrifice and
eating of a chicken and other
animals, reciting of text, and
prescribed roles for various family
and community members.
There is a belief among
Hindus that when death
occurs, it is easier for the
soul to depart if the body is
placed on the floor
The Vietnamese strongly
believe that death should occur
at the home, surrounded by
family. Medical care may be
sought at a hospital, but all
efforts are made to get the
person home before the
moment of death.
As is the carse in any work with children and families
from a variety of ethnic, cultural, and religious
backgrounds, the best way to determine cultural
influences is to:
1) ask questions, 2) listen, and 3) adapt interventions to
accommodate individual differences and needs.

25. Child Life Competency Development
Self-awareness influence
the child life specialist
ability to develop
therapeutic relationships
within the context of
effective, professional
boundaries
The ability to “design group
process to meet individual
needs” & “utilize effective
communication skills in the
process of supporting
children and families”
Probably the most essential
skill for supporting the grieving
child - convey information in a
developmentally appropriate
manner
A fundamental competency for child
life specialists is providing
opportunities for and facilitate “a
variety of play, activities, and other
interactions which promote
self-healing, self-expression,
understanding, and mastery”.
Play Facilitation Skills
Communication & Therapeutic
Response Skills
Group Facilitation Skills
Advocacy & Collaboration
Skills
Self Reflection Skills
Implications for Training
and Competency
Development
To respect and normalize the
spectrum of children’s and
family members’ grief
responses and to provide
support
Additional training and
experience may be indicated in
order for the child life specialist to
understand common grief
reactions of children and teens, to
offer appropriate therapeutic
responses, to facilitate the tasks
of grieving, and to facilitate
effective support groups.

26. Bereavement Support Systems
Several programs and practice can be identified
that serve to support children and families, as well
as the staff who work with dying or grieving
children and families.
Family Support Systems
Staff Support Systems
Examples: written information (funeral planning, grief
responses, community resources, information on
autopsies), legacy building, identifying appropriate
resources, etc.
Equally important are the systems and programs in
place to support staff in their skills development and
stress management relative to working with dying or
grieving children and families.
1) Fostering optimal team functioning
○ Team supports and trusts
○ Clear defined role boundaries
2) Successful orienting and precepting of new
employees
○ Immediate availability of support
○ Mentoring
○ Supervision to develop confidence
3) Ongoing training and resources for
experienced staff
○ Conflict resolution training
○ Memorial activities
○ Team meetings/ assistance programs
Image Source:
https://www.chaptershealth.org/care-support/grief-services/

27. Facilitating Peer Grief in the
Hospital Setting
A child &
family-centered
approach
Open-ended support
group model is
preferable to scheduling
a finite number of
sessions
It is suggested that one of the most effective models for
facilitating children’s grief is the peer support group.
Benefits: facilitating normalization, providing and receiving peer
support, countering the sense, of isolation, and creating a safe
place to share thoughts and feelings.
Things to consider when facilitating peer grief:
Child-directed play and
creative arts based
sessions
Facilitation by
professionals and/or
volunteers with specific
bereavement training

28. Rubin: Chapter 11
03
Child Centered Play Therapy With Children
Who are Dying

29. Child Centered Play Therapy (CCPT)
Helps terminally ill children
process through and cope
with challenging feelings,
experiences, thoughts, and
behaviors related to their
impending death.
Child’s direction
is valued as the
road to healing.
Offers children a
physical way to
‘talk out’ their
difficulties and
experiences.
Ages 3 - 10 Typically
Provides an opportunity to express, share,
communicate, explore, and create meaning
of themselves and their worlds; to master
their inner struggles, feelings, desires, and
perceptions to gain a fuller understanding of
their internal experiences.

30. Rubin: Chapter 12
04
It’s All About the Living: Play - Based
Experiences With Children Facing End of
Life

31. Palliative Care
“The active total care of the child’s body, mind and
spirit, and involves giving support to the family.”
Begins at diagnosis and continues regardless if the child receives treatment
or not
The goal is to evaluate and alleviate a child’s physical, psychological, and
social distress
Requires a broad multidisciplinary approach that includes the family and
community resources
Provided in tertiary care facilities, community health centers, and at home

32. Why Play?
● Dying creates distance between child and family
● Child keeps ‘BIG’ feelings to themselves
● Through play, child can maintain relationship with
family

33. Why Play? Continued
● Teaching tool
● Coping mechanism
● Fun
● Death exploration

34. Case Study Activity
05
Participating in Case Studies from the
textbook
*disclaimer pictures are not of the actual patients

35. Gina: 2 to 4 Years
★ Metastatic Retinoblastoma
(eye cancer)
★ Family came to Canada for
specialized medical
treatment from central
Africa; first with just Mom,
then siblings and Dad joined
later
Image source:
https://commons.wikimedia.org/wiki/File:Charity_gifts_for_Children_with_cancer_foundation_Vanessa_Isabel._Pediatric_Specialty_Hospit
al_of_Marac aibo.jpg/. Used under Creative Commons 1.0 license.

36. Situations
Building Rapport
Gina doesn’t speak English and is
coming from a foreign country.
How would you build rapport?
Prep for Surgery
How would you prepare Gina for
what she will see in the hospital?
How would you prep her for her IV
before surgery?
Expressing Feelings
Keep in mind Gina’s age. How
would you support her in
expressing her feelings?
Radiation Prep
How would you prep Gina to sit
still through her 25 radiation
treatments and some CT scans so
that sedation can be avoided?
Understanding Death
Gina has no concept of death given her age.
How would you go about communicating
this concept to her? Also note that her
family believes in heaven.

37. Leslie: 8 Years
image from Starlight Foundation, www.starlight.org
★ Terminal cancer, but in treatment to
extend life and improve quality of
life
★ From a northern, rural community;
had to travel hours into the city for
his medical care with Mom, which
meant months apart from Dad and
siblings

38. Situations
Lots of Energy
Leslie is filled with
energy and laughter.
What would you do to
embrace Leslie’s
energy in a hospital
environment?
Talking about Death
Leslie is finally able to
go to the playroom. The
topic of death needs to
be discussed. How
would you encourage
this conversation?
Missing Home
Leslie is missing
hunting and fishing.
Cancer has progressed
so Leslie cannot see
clearly and has some
paralysis on his left
side. How would you
bring these activities
to Leslie?
Deteriorating Body
At the end, Leslie could
only control his right
hand, and could barely
see anything or talk. You
could only hear him if
you put your ear to his
mouth. How would you
play with him?

39. Brian: 13 Years
★ Brain tumor that
would 100% be fatal
within one year
★ At home care for
majority of time; not
confined to hospital
image from Starlight Foundation, www.starlight.org

40. Situations
Talking about Cancer
Brian loves video games,
movies, and sports. How
would you use this to talk
about the cancer?
Exploring Feelings
How would you help a
13 year old boy assess
his feelings?
Normalizing Life
What are some ways you
would normalize teenage
boy life for Brian living
with a brain tumor?
Coping Through Progression
Brian became very angry
as his symptoms
worsened. How would you
help him cope with this?
Missing Home
Brian missed his cat once he
was full time at the hospital and
declined both pet therapy and a
stuffed animal. What would you
do to bring this joy back to
Brian?
Teaching
How would you encourage Brian to
ask questions, teach him about his
tumor, and cope with treatments
such as frequent blood draws?

41. SOURCES
Image Sources:
Starlight Foundation, www.starlight.org
https://commons.wikimedia.org/wiki/File:Charity_gifts_for_Children_with_cancer_foundation_Vanessa_I
sabel._Pediatric_Specialty_Hospital_of_Marac aibo.jpg/. Used under Creative Commons 1.0 license.
https://www.childlife.org/docs/default-source/aclp-official-documents/child-life-competencies_novembe
r-2019-updates.pdf?sfvrsn=d33e8c4d_2
https://www.chaptershealth.org/care-support/grief-services/
https://www.huffpost.com/entry/how-to-help-children-grief-death-parent_l_5d2f5bcee4b0a873f645c2dd
https://theconversation.com/gone-but-never-forgotten-how-to-comfort-a-child-whose-sibling-has-died-
101847
http://hannahdrewsphotography.com/2017/10/chicago-hospital-fresh-48-welcoming-louie/
https://www.caredimensions.org/userfiles/files/ChildLifeArticle%20Reprint_onlineFile.pdf
https://www.themarkmakers.org/blog/2019/5/20/t45fpcoz75lpmql3oftiizeoo0k9f6
https://therapybyangelina.com/the-future-of-expressive-arts-therapy/ &
https://www.texaschildrens.org/departments/child-life/art-therapy
https://www.dougy.org/about/our-story/mission-history
Thompson, R.H. (2018). The handbook of child life: A guide for pediatric psychosocial Care (2nd
edition). Springfield, Ill: Charles C. Thomas.
Rubin, R. (2018). Handbook of medical play therapy and child life: Interventions in clinical and
medical settings. New York, NY: Routledge.

42. Thank you for listening &
joining us for our
presentation!
Right after this class (at 7:00) don’t forget
to join the Child Life Organization Meeting!
Dr. Leigh will be joining us tonight &
speaking, so you don’t want to miss out!
Meeting ID: 989 5025 0147
ANY QUESTIONS?