1. Communication in Pediatric Palliative Care
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Communication in Pediatric Palliative Care
Stacey Berg, MD
Texas Children’s Hospital Advanced Practice Providers Conference

2. Some terms
Palliative care-amelioration of physical, psychological, social distress, including family, in life-threatening illness
Hospice- palliation of terminally ill patients (death expected within 6 months)
End of life care- when death is likely, fairly soon
From pallium, cloak

3. How many children die per year in US?
2.5 million deaths/year US total
53,000 age 0-19
29,000 infant (<1 year)
11,000 (1-14 years)
About 2300 from cancer

4. End of life in children with cancer
Half died in hospital
Half of those in ICU
79% died of PD
2/3 had hospice discussion- median 58 days
59% died at home
21% died of treatment related complication
Most had hematologic diseases
Most (76%) had BMT as last treatment
Most (88%) died in ICU
Most (94%) had vent in last 24 hrs
Wolfe, New Engl J Med 2000

5. End of life in children with cancer
90% of parents say children suffered a lot or a great deal in last month of life
Pain
Fatigue
Dyspnea
Discordant with physician notes
Poor appetite
Constipation
Wolfe, New Engl J Med 2000

6. What does a general pediatric palliative care service look like?
Feudtner, Pediatrics, 2011

7. Reasons for consult Symptom management (58%)
Facilitate communication (49%)
Facilitate decision-making (42%)
Logistics or coordination of care (35%)
Transition to home (14%)
DNR discussion (12%)
Feudtner, Pediatrics 2011

8. Patient characteristics
Diagnoses
Genetic/congenital conditions 41%
Neuromuscular disorders 39%
Cancer 20%
Respiratory disorders 13%
Gastrointestinal disorders 11%
Feudtner, Pediatrics 2011

9. 20% already had pain service consult
Symptoms at intake
Cognitive impairment (47%)
Speech difficulties (46%)
Pain (31%)
Poor po intake (26%)
Seizures (25%)
Fatigue/sleep problems (23%)
20% already had pain service consult
Feudtner, Pediatrics 2011

10. Recommendations from consult
Social work 73%
PT/OT 45%
Chaplaincy 44%
Companionship or volunteers 25%
Feudtner, Pediatrics 2011

11. Why do we delay the conversation?
Barriers perceived by pediatric providers
Unrealistic parent expectations
Differences in understanding of prognosis
“The family isn’t ready”
“We can’t take away hope”

12. Why do we delay the conversation?
Barriers perceived by hospices in NC
Lack of pediatric referrals
Family desire for concurrent care
Complexity of children’s needs
Lack of trained personnel
Concurrent Care– Affordable Care Act should have positive impact
Varella, Am J Hosp Palliat Care 2012

13. Why do we delay the conversation?
Barriers that probably are really there
We haven’t told family the prognosis
We’re not ready to have the discussion
Conversations are time-consuming
Community resources for children variable

14. Gap between MD and parent perception
First MD recognition no realistic chance of cure: 206 days before death
First parent recognition: 106 days
Mean difference: 101 days
Wolfe, JAMA 2000

15. Does palliative care make patients depressed and anxious?
Temel, N Engl J Med 2010

16. Independent of individual prognosis Acceptable to patients, families
Adolescents felt better informed
Increased parent-child congruence
Lyon, JAMA Pediatr 2013

17. Domains important to families
Relationship building/respect for family role
Demonstration of effort and competence
Information exchange
Availability
Appropriate level of child and parent involvement
Coordination of care

18. Roadblocks in communication
Things providers do in meetings
Interruption
Domination (lecturing)
Premature reassurance
Collusion (both avoid difficult topic)
Blocking (MD changes subject)
Ignoring affect
Bauman, Curr Probl Cancer 2011

19. Simple starters Tell me how you think things are going
What are you hoping/expecting from the treatment?
What’s bothering your child the most today?
What are you worried about the most right now?

20. Techniques of communication
Normalize
Assess understanding
“Tell me more”
Preemptive communication
“you might be wondering”
“often people want to know”

21. SPIKES to discuss bad news
Setting
Perception (what patient knows)
Invitation (what does patient want to know)
Knowledge (provide facts)
Emotion
Summarize

22. NURSE tips to explore emotions
Name
Understand
Respect
Support
Explore

23. “My wishes” How I Want People to Treat Me How Comfortable I Want to Be
What I Want My Loved Ones to Know
What I Want My Doctors and Nurses to Know

24. All providers are competent!
Primary screening
All providers are competent!
Pain/symptom assessment
Social/spiritual concerns
Understanding
Illness, prognosis, treatment options
Goals of care
Patient’s goals
Do treatment options match?
Advance directive?
Transition from hospital
Weissman, J Pall Med 2011

25. Palliative care triggers
Potentially life-threatening dx and:
“Surprise question”
Decline in function, feeding intolerance, weight
Goals of care unclear
Disagreement- patient, staff or family
Major treatment decisions
Resuscitation
Non-oral feeding/hydration
Weissman, J Pall Med 2011

26. Conclusions
Palliative care supportive for everyone at every stage of serious illness
Enhances quality of life
Does not preclude curative intent
Communication is hard but not complex

27. Survival
Standard therapy for NSCLC vs standard + early palliative care
Erlotinib + gemcitabine vs gemcitabine alone
6.24 vs 5.91 months
11.6 vs 8.9 months, P = 0.02
Moore, JCO 2007
Temel, NEJM 2010

28. Costs
Morrison, Arch Intern Med 2008