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Objectives
 Discuss differences in EOL Care for Children
 Understand the 4 domains of Quality of Life
 Discuss roles in a Pediatric Palliative Care Team.
 Discuss implications for the transition to
palliative care.
 Identify techniques to promote an
interdisciplinary approach to children at end of
life.
Pediatric Palliative Care
 Death of a child is
viewed as outside
the natural order
of life.
 Children represent
hope, energy, and
health
 53,000 Pediatric
Deaths a year
18,989 Neonatal, 9538 Infant
24,519 ages 1-19 (~12,260 due to CCC)
Child
Deaths
National Vital Statistics Report
Natthews & MacDorman, 2008
Children
with Complex
Chronic
Conditions
Children with
Special Health
Care Needs
644,593 – 1,652,802
Bramlett et al., 2008
10,743,211 – 16,528,017
Bethell et al., 2008
82,640,086
US Census Bureau, 2008
Population of Children Under 18
Hellsten, 2009, in press
Palliative Care
Curative Focus:
Disease-Specific
Treatments
Palliative Focus:
Comfort / Supportive
Treatments
Bereavement
Support
Definition
 “active, total approach to care, embracing
physical, emotional, social, and spiritual elements.
It focuses on enhancement of the quality of life
for the child and support for the family, and
includes management of distressing symptoms…”
 Lantos JD, Arch Dis Child Fetal Neonatal Ed 1994
Treatment Goals
 Curative Focus & Palliative Care Focus
 When should possibility of death be discussed?
 Treatment goal becomes palliation
 Focus of hope
 successful palliative care
 Focus on quality of life
Core Concepts of Palliative
Care/Hospice Care
 Respect
 Comprehensive care
 Utilizing the strength of the
interdisciplinary process
 Care for the caregiver
 Bereavement Support
Core Concepts of Palliative
Care/Hospice Care
 Respect:
 Family centered care
 What is “family”?
 Patient and family values / beliefs, cultural and
spiritual perspectives
 Assist patient and family in establishing goals
(ongoing process)
 patient / family preferences
Core Concepts of Palliative
Care/Hospice Care
 Comprehensive care:
 Do not abandon
 Physical comfort
 Emotional / spiritual support
 Affirm the parental role
 Support to other family
Core Concepts in Palliative
Care/Hospice Care
 Interdisciplinary Team:
 Accountable team

RN, MD, SW, Psychologist, Chaplain, Child Life,
Volunteers
 Incorporate Institutional / community resources
 Seamless Care
Core Concepts in Palliative
Care/Hospice Care
 Care of the Caregiver:
 Demands on family

Physical, emotional, financial
 Services available



24 hour availability of help
counseling
Personal care assistance
 Anticipate needs
What is Quality of Life to
Kids?
Stakeholder Study—2003 JP DT
Indicators For QOL
1. To be at home.
2. To be pain free.
3. To be loved.
4. To be a kid.
5. To do activities.
6. To have purpose.
Model of Quality of life
 Physical
Well-Being
 Psychological WellBeing
 Social Well-Being
 Spiritual
Well-Being
Ferrell, et al, 1991
Physical Well-Being
 Pain
 Multiple other symptoms
 Mobility
 Equipment needs
 Impact on family caregivers
Psychological Well-Being
 Wide range of emotions and concerns
 Meaning of illness
 Coping
 Cognitive assessment
 Depression
Social Well-Being
 Relationship/role description
 Caregiver burden
 Financial concerns
 Impact on siblings
Spiritual Well-Being
 Religion and spirituality
 Seeking meaning
 Hope vs. despair
 Importance of ritual
Physical
Psychological
Functional Ability
Strength/Fatigue
Sleep & Rest
Nausea
Appetite
Constipation
Pain
Anxiety
Depression
Enjoyment/Leisure
Pain Distress
Happiness
Fear
Cognition/Attention
Quality of Life
Social
Spiritual
Financial Burden
Caregiver Burden
Roles & Relationships
Hope
Suffering
Meaning of Pain
Religiosity
Transcendence
Affection/Sexual Function
Appearance
Adapted from Ferrell, et al. 1991
Kids vs. Adults--- Differences
in Hospice Delivery
Differences in Patients1. Children are not usually legally
competent to make decisions regarding
their care
2. Children are in a developmental
process that affects understanding
and articulation of illness and health,
life and death, loss and grief….
Growth & Development
Infancy
Experience
through
sensory
information
Aware of
tension and
unfamiliar and
seperation
Comfort by
touch, rocking,
sucking and familiar
people and toys
Growth & Development
Early Childhood
2-6 years old
See death as reversible
Death is not
personalized
magical thinking
May play with stuffed
animal lying it down "dead"
May equate death with sleep
Wish it away
Provide concrete
information
"A dead person no longer
eats"
Growth & Development
Middle Childhood
7-12 years old
Personalize death
Aware death as final
May understand
causality
Aware that death can
happen to them
understand that death
can be caused by illness
May request graphic
details about death
Talk about disease
specifics
Growth & Development
Adolescence
13-18 years old
Appreciate universality
of death but may
distance self from
it
Risky behavior
"it can't happen to me"
"everyone dies anyway"
May speak of
unrealized plans
Differences Cont…
3. May not have the verbal skills to
describe needs.
4. Frequently protect parents and other
significant persons at personal
expense to themselves.
5. More often High Tech Medical cases
Differences---Family
Issues
1.
2.
3.
4.
5.
6.
Families often have other minor children,
siblings to the patient, often there is difficulty
communicating with them, involving them and
maintaining family patterns.
Siblings stresses and burdens.
Grandparents….dealing with issues with their
children as well.
Stress and burden of the child's disease tends
to be lengthy.
Fears of home vs. hospital
Less reimbursement options and more financial
strain
Differences –Professional
Caregiver Issues
1.
2.
3.
4.
5.
May want to protect the child and family
from the truth.
Sense of failure at being unable to “save”
the patient.
May have out of date concepts about pain
management for children.
May have own “baggage” that affects care.
May have Knowledge Deficits regarding
pediatric care.
Cont….
6. Professional caregivers may have a
strong sense of ownership of the child,
to the exclusion of the parents, and
may even assume that they know what
is best for the child.
Differences--Institutional/Agency Issues
1. Limited Reimbursement, additional
funding must be secured.
2. Usually very high staff intensity
3. Need for special competencies in the
management of developmental levels,
family/sibling issues, and pain and
symptom assessment
4. Different focus on bereavement care
Cont…
5. Strong resistance among physicians to
make a 6-month prognosis.
Ethical Issues
 Pain control
 Phase I medications
 Supplemental nutrition / hydration
 DNR status
 Teen decision making—Assent/Consent
The Role of Communication
 Clear communication and encouragement of open
discussion and shared decision making, when
appropriate, can avert many ethical dilemmas.
Communicating With Dying
Children
Goals
1. Try to understand your own feelings.
2. Assess and meet the needs of the
particular child.
3. Correct misconceptions.
4. Allow for fears.
5. Reduction of isolation.

Recommendations:
1. Communicate with kids age
appropriately and, in the language most
comfortable to them. (Play is most
usually the Universal Language for
most kids)
2. Build and nurture trust.
3. Always be invited.
4. Empower children as much as possible.
5. Recognize when alone time is needed.
The Role of the Social
Worker
 Provide emotional support and counseling to the
patient and the patient’s family.
 Help to build a community of support around the
patient and his/her family.
 Advocate for the patient’s needs.
 Provide support and consultation to community
professionals who are involved with the patient
and his/her family.
Role of the RN
 Anticipate
 possible side effects
 Prevent
 suffering through careful planning
 Treatment
 reduce symptoms and suffering
Role of the RN
 Promote
 Opportunities to live fully
 Advocate
 for the child and family
Role of the RN
 Medical Management
 Physical / emotional presence
 Educator / resource (Knowledge is comfort.
Ignorance is fear)
 Respite
 High tech management
Palliative Care
Physician/Medical Director
 Over sees the patients care plan/IDT
 Conducts meetings with family to engage
in Goal planning and care plan direction
 Offers consultation to other physicians
with regard to palliative care
 Engages in pain and symptom
management
 Educates
Role of Volunteers
 Patient and family support through many
avenues:
 Listening
 Playing
 Home support, groceries, laundry ,yard
work
 Sibling work
 Integral member of IDT
Goals
 Bring emotional and physical comfort
 Identification and planning around medical,
psychosocial, and spiritual issues
 Help family identify their needs
 Seamless care
 Peaceful death with dignity
Professional Boundaries
 Honor family space
 Physical and emotional
 Recognize potential problems
 Keep ego in check
 Rely on team members for advice and support
Self Inventory
 Identify what you can offer
 Know when to ask for help
 Knowledge strengths / deficits
 Emotional needs
 Potential barriers to professional, objective care
 Identify and use good stress relief strategies
Self Inventory
 Identify colleagues / friends who may serve as
outlets for feelings / frustrations
Care within the Dying Process
 Identification of needs and honoring of wishes
 Definition of roles
 Managing of physical decline (pain and symptom
management)
 Advocacy for child and family
Options of Care
 Details of DNR (comfort bracelet)
 Hospital / Home (both?)
 Hospice
 Supportive care
 Respite for caregivers
Needs Assessment
 Interdisciplinary process
 Prioritize needs
 Comfort
 DNR status
 Wishes for time of death
 Cyclical process
Goals of Care
 Partner with patient and parents
 Educate and collaborate on treatment plan
 Pain management plan
 Side effects of medications
 Child can sleep undisturbed by pain
 Child is able to move with minimal pain
 Child is pain free at rest
 Child has own goals to complete prior to EOL
Roles
 Establish a chain of communication within the
palliative care team
 Be cognizant of patient and family needs and
wishes
 Define all clinician roles
 Allow family to define their roles
When Death is Near
 Let families choices and decisions guide
 Remember to honor sacred space for families
 Honor all wishes possible with regard to personnel
present
 Calls to MD / Team
 Have phone numbers readily available
Interventions at Time of
Death
 Try to have contact with the funeral home ahead
of time and discuss family wishes with regard to
post mortem protocol
 Give whatever time is needed.
 Family may want to do post mortem bath / care
Interventions at Time of
Death
 Be a presence (silence
is O.K.)
 Gentle touch
 Keep focus on family (
do not speak of
personal exp)
 refer to child by name
 Avoid platitudes (“time
heals all wounds”
“You’re lucky, it could
have been worse”
 If in doubt about what
to do, LISTEN!
 Do not forget siblings
Interventions at Time of
Death
 Offer:
 Bereavement packet
 hand molds / foot print
 Memory box
 hair
 quilt
 Respect family wishes and rituals
Needs of a Dying Child
 Love, security, reassurance (Maslow)
 honesty and information
 control
 privacy
 relief (physical, spiritual, emotional)
Follow Up
 Have designated colleague / friend you can go to
for support
 Team follow up extremely important for
debriefing / sharing of feelings
 Follow up with family
 Annual Pediatric Memorial Service
 Bereavement Program
 Patient funerals / memorials
Words of Truth
 “Although the world is full of suffering, it is also
full of overcoming it”

Helen Keller
 “What greater pain could mortals have than this:
to see their children dead”

Euripides circa 420BC
Many Thanks
Beautiful Colors and
Beautiful Things and
Beautiful People.
What special gifts you have given all of us.
Mattie Stepanek July 1990-June 2004
Thank you Mattie……..