End of Life Care for Pediatric Residents During PICU Rotation: Emphasis on Improving Competence in...
Transcript of End of Life Care for Pediatric Residents During PICU Rotation: Emphasis on Improving Competence in...
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
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
History of Paternalism / Protecting the Patient
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
Showing Humanness
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
• As the treatment goal becomes palliative care the focus of hope changes
Curative Focus
Bereavement Palliative
Focus
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
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
The Relational Context
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
Investigation
Diagnosis
Treatment
PERSON
Restore wholeness
Relief of Suffering
Improve Quality of Life
Parental Reactions
1. Type of reaction (typical/atypical)2. Our Automatic Thoughts3. Possible Reasons for Reaction4. Our Responses to Reaction
Palliative Medicine:Bridging the Gap
Palliative Care
MEDICINE
SCIENCE ART
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