1. Decision making in Pediatric Palliative Care
Scott Maurer, MD
Associate Professor of Pediatrics
University of Pittsburgh School of Medicine
Chief, Division of Palliative Medicine and Supportive Care
Children’s Hospital of Pittsburgh of UPMC

2. Overview Challenges in decision making
How hard can it really be?
What are the stakes?
When do we have these conversations
Who, what, when, where, and why?
Decision making in practice
Approaching difficult conversations
Using values and goals to guide decisions
Nuts and bolts
How does advance care planning work?
Judging success

3. The Elephant in the Room
The death of a child is out of the order of nature
It’s rare
It’s scary
Our culture hasn’t designed us to deal with children dying
© 2015 Mitra Farmand

4. Challenges We are uncomfortable talking about it
Especially nurses and trainees
Medical trainees have cited lack of training and knowledge in this area
Those who are comfortable:
Misunderstand end of life care options
Including Do Not Resuscitate options
Hospice options
Nurses often feel decisions are made too late
Leads to uncertainty amongst medical team
Trickle down effect to parents/patients
Kruse, et al. Plos One. 2017
Sanderson, et al. JAMA Peds. 2013
Kolarik, et al. Pediatrics. 2006
McCallum, et al. J Pain Sympt Mgt. 2000
Michelson, et al. Ped Crit Care Med. 2013

5. The Decisions themselves are difficult
Choices are complicated and numerous:
Continue disease directed therapy?
Experimental options?
Artificial life sustaining therapies?
G-tube?
Trach?
Vent?
Dialysis
ECMO
Do not resuscitate
End of life care at home? In hospital?
Hospice?
Hinds, PS, et al. Cancer Nurs

6. What We Do Now Matters Later
After the death of a child parents may have decisional regret about:
choosing the last course of chemotherapy
not talking with their child about death
not choosing the location of death
Significant numbers of parents have difficulty with unresolved grief and experience:
High rates of depression
Sleep disturbance
Increased physician visits
Greater likelihood to miss work
Mack, J., et al. J Clin Oncol. 2008
Wolfe, J., et al. J Pain Symptom Manage. 2008
Kreicberges, U., et al. NEJM. 2004
Lannen, PK. , et al. J Clin Oncol. 2008

7. What We Do Now Matters Later
Siblings suffer during the child’s illness and after their death
Psychosocial issues:
Sleep disturbance
Low self-esteem
Delayed maturity
Symptoms are worse in the first year
Increased anxiety/depression
Increased use of alcohol and illicit drugs
Almost all siblings claim to be affected by the loss many years later
Rosenberg, et al. JPSM 2014.
Eilegard, et al. Psychooncology. 2013

8. So, How do we help?
© 2015 Mitra Farmand

9. Who, what, when, where, why? Are they ready for palliative care?
Who should we approach?
When should we approach them?
How should we approach them?
How to make a needs assessment:
Pain?
Decision making needs?
Rehab?
Social work/concrete needs?
Emotional needs?
Spiritual needs?
End of life care needs?
Bereavement needs?
Who, what, when, where, why?

10. Feeding the Meter:
The benefit of NOT having an agenda

11. A framework for decision making
Hope
Prognosis
Decisions
Expectations

12. A framework for decision making
Prognosis
Hope
Expectations
Goals

13. Goals Cure Life prolongation
Life prolongation with an emphasis on quality of life
Comfort
Value of being realistic versus being neutral
Recognition of bias we bring to the table
Truly believing that there isn’t a right or wrong answer
Macauley, JPM

14. How goals change Cure Life Prolongation Comfort Moderate Fight
Response
Life Prolongation
Minimal
Embrace
None
Comfort
Treatment
Intensity
High
Win
Eradicate
Mild
Live with
Halt Progress
Attitude
Disease
Effect
Advancing Illness

15. How do parents make decisions?
Parents want to “do right” by their child
Suffering plays a key role
Need to continue
Quality of Life
Suffering
Maurer, et al. J Clin Oncol. 2010

16. A framework for decision making
Prognosis
Hope
Expectations
Goals
Decisions

17. Tools to Help you Along the way

18. Helping People Get to Goals
Reframe
Expect Emotion
Map Values
Align with Values
Plan

19. Reframing
An opportunity to talk about why the path we’re on isn’t working
Given what’s going on, it might be a good time to talk about what to do next.
We’re in a different place.

20. Reframing Ask-tell-ask Ask 1: Know where you stand
What have the doctors been saying to you?
Can you tell me more about your last hospital visit?
What’s different about this illness/hospitalization/visit?
Tell: What is your headline?
Be concise
Avoid using further explanation to “soften the blow” or “help them understand.”
Ask: Yield the floor
What other questions do you have?
Given what we’re up against, what are you hoping for?

21. Expect Emotion Be cognizant of the type of response you are getting
Cognitive v/s emotional

22. If Only We could have Explained it Better…
© 2015 Mitra Farmand

23. Expect Emotion Be cognizant of the type of response you are getting
Cognitive v/s emotional
NURSE
Name – This is really hard.
Understand – I can’t even imagine what you’re going through.
Respect – You are such a strong advocate for your child.
Support – I will support you no matter what.
Explore – Can you tell me more about what you’re thinking?

24. Map What’s Important
I was wondering, given what we’re up against, what are you hoping for?
What’s most important to you now?
…and what else…and what else…
Looking at the future, what are you most worried about?
I know what the doctors have said will happen, I wonder though, what do you think will happen?

25. Align with Values What I’m hearing you say is…
It sounds like X, Y, and Z are really important to you.
Fighting the cancer is really important to you, and I also hear you say that you don’t want your son to suffer.

26. Plan
The balance between giving choices and making recommendations can be tough
Bear in mind the patient/parent’s goals and see how they align with their values
I am hearing that the most important thing after your baby is born is that he is comfortable and acknowledged as an important part of your family. Given that, can I make a suggestion as to what we might do moving forward?

27. Tips For When You Get Stuck
Tell me more…
If a patient/parent says something you’re not sure about
If the patient/parent is having a difficult time talking
Use “I wish” statements
I wish the chemo had worked
I wish things were different
Give some space
You have every right to be angry
It’s ok to take a minute

28. Acknowledging Roles: The Good Parent
A sense of being a “good parent” to the dying child can:
Provide emotional relief to the family
Possibly decrease morbidity in the bereavement period
Someone who:
Makes informed, unselfish decisions in the child’s best interest
Meets the child’s basic needs
Remains at the child’s side
Protects and advocates for the child
Shows love
Teaches moral values
Prevents suffering

29. Advance Care Planning
There are several advance care planning tools for children and adolecents
My Wishes
5 Wishes
Voicing My Choices
Studies have demonstrated that ACP discussions are:
Useful for patients/families of all ages
Emotionally intense
Anxiety provoking for providers
Best when done early in the disease course
Best when revisited
Kazmerski, et al. Ped Pulmonology. 2016
Dallas, et al. Pediatrics. 2016
Needle & Smith. JPM. 2016
Lyon, et al. AIDS Care. 2017

30. Care Coordination Integrate the plan of care
Share plan across disciplines
Multidisciplinary  Interdisciplinary
Share plan across settings
Clinic
Hospital
Home Health
Hospice

31. Having Friends is Important
If you have resources
Use them!
Learn what they can offer!
Meet often!
Child Life
Music Therapy
Art Therapy
Behavioral Health
Bereavement Care
Social Work
Spiritual Care
Nutrition
Rehab Services
Having Friends is Important

32. The importance of Asking
Many families have no idea what resources are available to them
You don’t have to be an expert, you just need to know where to get help
Spirituality as an example:
Parents are often not asked about spiritual needs
Many desire spiritual support
Those that don’t, aren’t offended when asked
Simply asking about spiritual needs
Increased parental perception of support
Increased utilization of spiritual resources
Didn’t cost anything
YOU DON’T KNOW IF YOU DON’T ASK!
Kelly, et al. J Pall Med

33. Some helpful Resources
VitalTalk
Quick guides for communication
It’s FREE in the app store
Advance Care Planning Documents

34. Questions?