Transcript Assessment and Management of Pain in Pediatric Palliative Care

End of Life Care for Pediatric
Residents During PICU Rotation:
Emphasis on Improving Competence
in Communication Skills : Session II
Handouts
• End-of-Life Interview Guidelines
• End-of-Life Family Interview- Six Step
Protocol
History of Paternalism /
Protecting the Patient
Conceal most things from the patient while
you are attending to him. Give necessary
orders with cheerfulness and
serenity…revealing nothing of the patient’s
future or present condition. For many
patients…have taken a turn for the
worst…by forecast of what is to come.
Hippocrates
Showing Humanness
It is clear from research conducted with family
members that there is more at stake here than
the addition of behavioral skills to the
practitioner’s repertoire. There are times when
children and family members need a sense from
their professional caregivers that their suffering is
acknowledged and, at moments, shared. At other
times, they need from their practitioners the
capacity to step out of a narrowly defined
professional role to reveal a more “human” side.
Browning, 2003
ABCDE Communication Model
• A = Advance preparation
• B = Build a therapeutic environment
and relationship
• C = Communicate well
• D = Deal with patient and family reactions
• E = Encourage and validate
emotions
Rabow and McPhee, 1999
Buckman’s 6-Step Protocol
• Start off well
• Find out how much the patient knows
• Find out how much the patient wants to
know
• Share the information (aligning and
educating)
• Respond to the patient’s feelings
• Planning and follow through
Buckman, 1992
Experts in End-of-Life Care. . .
• Spend nearly twice as much time with
patients
• Less verbally “dominant”
• Less treatment and biomedical issues
discussed
• More psychosocial and lifestyle discussion
Roter et al., 2000
Transitioning to Palliative
Care
• Possibility of death should be addressed
at diagnosis with goal of cure in most
cases
Curative Focus
Palliative
Focus
Bereavement
• As the treatment goal becomes palliative
care the focus of hope changes
Acknowledging Parental Anguish
Acknowledge with statements such as:
• “This must be very difficult for you.”
• “This must be a parent’s worst nightmare.”
• “I can see that your hearts are broken.”
Avoid statements such as:
• “I know how you feel.”
“Is it okay to show my emotions?”
• Most families view a clinician’s show of emotion
•
•
•
•
in a positive light
Clinician emotions are often interpreted as a
sign of caring by families
The doctors and nurses who allowed themselves
to show their genuine emotions helped me the
most. - Parent of child in the ICU, Meyer et al., 2002
Monitor and pace yourself
Seek opportunities to process and understand
your own emotions
“People who acknowledge
their helplessness become
helpful!”
• Don’t be afraid to acknowledge your
helplessness to the dying person or
family members.
• It is okay to do/say nothing.
• “Be slow to speak and swift to hear!”
Alan D. Wolfelt, Ph.D.
Hoping for the best,
while preparing for the
worst
Although it may seem contradictory, hoping for
the best while at the same time preparing for the
worst is a useful strategy. . . .By acknowledging
all possible outcomes, patients and their
physicians can expand their medical focus to
include disease-modifying and symptomatic
treatments and attend to underlying
psychological, spiritual, and existential issues.
Back et al., 2003
The Relational Context
Making time available, finding a quiet place to
talk, maintaining eye contact, sitting instead of
standing, learning to be empathic. All of these
are important tools in the complicated and
challenging endeavor of communicating well
with children and families at the end of a child’s
life. But our tools will only do their job well if
we understand and embrace the relational
context in which we use them.
Browning, 2003
Adopting a collaborative
relational stance
• Clinical practice in pediatric palliative care is
•
•
•
fundamentally relational.
It involves a “two-way” rather than “one-way”
relationship with child and family.
Engaged practitioners must be capable of
moving fluidly between the position of “expert”
and the position of “learner.”
Children and families are regarded as experts in
regard to their own experience.
“What does all of this really mean?”
• Can the caregiver make sense of the
medical info they are given enough to
translate it into relative terms? (Persistent
vegetative state means they will never
walk, talk or play but they could breathe
on their own.)
• Ask the family to define their meaning of
“better”
Enter into what someone
thinks and feels
without trying to change
what they think and feel!
Alan D. Wolfelt, Ph.D.
Summary of the
Healthcare Provider’s Role
• We are a vital link in the chain to a family’s
•
ability to understand and cope
We need to first understand what our feelings
are
– then get a feel for where the family is in the grieving
process and what their needs are
– maximize all available resources
– respect cultural and socio-economic differences
– allow them to go through all stages of grieving
– be supportive, not judgmental
Goals of Medicine
TO CURE
TO HEAL
DISEASE
PERSON
Investigation
Restore wholeness
Diagnosis
Relief of Suffering
Treatment
Improve Quality of Life
Parental Reactions
1.
2.
3.
4.
Type of reaction (typical/atypical)
Our Automatic Thoughts
Possible Reasons for Reaction
Our Responses to Reaction
Palliative Medicine:
Bridging the Gap
SCIENCE
ART
Palliative Care
MEDICINE
Spirituality
(RELIGION)
Withdrawal of Support
• The parents need to be reassured that
– they have made the right decision (support)
– their child will remain comfortable
– the family is allowed adequate time with the
patient
– the staff help facilitate “letting go”
– being present is important if they want that
Withdrawal of Support
• Allow the family the option to be present
(or not) during and/or after the
withdrawal process
• It is sometimes difficult to be supportive
and non-judgmental
• Be an active listener to get a sense of
what their needs are
– If you’re not sure, it is appropriate to ask
Goals of Difficult Conversations
• The goal is not to convince a family of what we
•
believe should be done, but to align, educate
and support their decision, knowing that they
have all of the information needed in order to
make the right decision for the patient and
themselves.
Our role becomes that of an advocate; and
when we offer options of care (DNR, comfort
care, etc.), we need to respect whichever choice
the family makes and support it without
judgment.
Good End-of –Life Care
You can say your patient was given good
end-of-life care if:
– The patient was kept pain-free and
adequately sedated
– The patient was allowed to die in comfort and
with dignity
– The family feels confident that they received
clear and accurate prognoses
“Find joy
in the
experience.”
Javier R. Kane, MD