1. Advance care planning with children
Elisabeth Potts Dellon, MD, MPH
December 2014

2. Advance care planning with children
Pediatric palliative care
The illness experience /talking to children about serious illness and dying
Advance care planning
What is it?
Approach
Outcomes
Treatment decision-making

3. Pediatric palliative care
Aims to enhance quality of life for seriously ill children
“The goal is to add life to the child’s years, not simply years to the child’s life” (AAP position statement, Pediatrics 2000)
Palliative care should be integrated with curative therapies at the time of diagnosis and continued throughout the course of illness
Lanken PN. AJRCCM 2008

4. Pediatric palliative care
Symptom management
Psychosocial and spiritual distress
Family function
Quality of life
Decision-making
Planning for the future
Goals of care
Advance care planning

5. Pediatric palliative care
Developmental factors affect understanding of illness & death
Importance of educational activities, recreation and play to communication, decision-making and quality of life
Normal development is interrupted by serious illness
Greater involvement of parents/legal guardians as direct caregivers and decision makers
Reliance on proxy reporters
Role of child involvement, ethical issues regarding confidentiality and assent/consent
Emotional impact of serious illness on everyone involved
Developmental stage affects understanding of illness and death
Understanding of diagnosis
Understanding of prognosis
Acceptance of mortality
Communication skills
Fears

6. Talking to children about serious illness & dying
Loss of potential
Myths and misperceptions
Young children don’t experience grief
Children, adolescents and adults experience grief the same way
Children are not aware they are dying
Children should be protected from death

7. Advance care planning (ACP)
Planning for future medical care
A communication process intended to align medical treatments with the goals and wishes of children and their families
Products of advance care planning
Advance directives: living will, health care proxy
Medical orders for scope of treatment: MOST, POLST
Legacy projects: “how I want to be remembered”

8. ACP with children: benefits
Open dialogue decreases anxiety and emotional distress for child and parent
Opportunity to clarify concerns and correct distorted beliefs about disease causality
Acknowledges reality of death
Demonstrates confidence (parental and provider) in child’s ability to cope
Supports child’s roles in society and family

9. ACP with children: approach
Framework for discussion
Age and developmentally appropriate
Sensitive delivery
Respectful of cultural and religious beliefs
Safe environment conducive to open expression of feelings and thoughts
Presence of strong, supportive adult
Utilize experts
Child Life, Psychology
Use appropriate tools

10. ACP with children: approach
Starting the conversation
“Some people find it helpful to talk about medical care plans ahead of time to ensure that wishes are understood and followed.”
“Would it be helpful for us to talk about what would happen if treatments intended to cure your illness were no longer effective?”
Adapted from Weiner L, et al. JPM 2008

11. ACP with children: approach
Tips for communication
Open communication  less emotional distress
Developmentally appropriate information
Sensitive delivery
Cultural sensitivity
Include a supportive adult

12. ACP with children: ethical considerations
Children are in the process of becoming independent, responsible people
Decision-making involving the health of children should flow from responsibility shared by parents and providers
Assent of children should be included to the greatest extent possible
AAP Committee on Bioethics

13. Advance care planning: outcomes
Increased knowledge and understanding
“Open door” for future communication
Advance directives
Living will
Health care proxy/power of attorney
Example: My WishesTM
Medical Orders for Scope of Treatment (MOST)

14. My Wishes TM ACP guides Adult version Available in 26 languages
Health care agent
Medical treatments
Life support options in different scenarios
Comfort
Setting, conditions
What others should know
How to be remembered
How body is treated after death
Funeral/memorial service
Available in 26 languages

15. My Wishes TM ACP guides Adolescent version Comfort Support
Medical decisions
Medical treatments
What others should know
Spirituality
Legacy
Belongings
Messages/pictures

16. My Wishes TM ACP guides Children’s version
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

18. Medical Orders for Scope of Treatment (MOST form)
Standardized form for translation of patient preferences for medical treatments into actionable medical orders and to convey those orders across different settings of care
Range of treatment options
Portable

19. MOST form Developed with input from health care providers
Established in NC in 2007
Demonstrated benefits in adults
Increased rates of accurately documented patient treatment preferences
Consistency of end of life care with prior directives
Limitations
Practical issues of adoption and use
Typical barriers to communication about serious illness

21. Using the MOST form Introducing the form to patients & families
Guide to conversations about preferred location of care, treatment preferences, overall goals of care
Define treatment options
Consider quality of life/effects of treatment options
Who provides treatment and where
Reviewing the MOST form

23. Out of hospital/ “portable” DNR order
DNR does not mean “do not treat”
This form only instructs first responders not to initiate CPR

24. Treatment decision-making
Informed decision-making
Shared decision-making
Think about the options we often present to seriously ill children and their families…

25. Typical scenario?
“Your child is critically ill. We’re doing this, we’ve done that. He’s a little better. Sort of, but not really. Lots of his organs aren’t working. We can do this, we can do that, we’re not sure any of it will work. What would YOU like us to do?”
Option A
Option B
Option C
…. WRONG!!!!!!!!!!!!!

26. Treatment decision-making
We can do a lot to help patients and families make good decisions
Present them early and often with options
Give them reasonable, realistic choices
Ask them how they make decisions
Relieve some of the burden of decision-making
Acknowledge that there is often not a “correct” answer
Try (really hard!) not to judge them

27. ACP with children - Take home points -
Many benefits to starting the conversation early
Involve children when possible and appropriate
Learn about documentation of treatment preferences and how to introduce planning tools

30. Treatment decision-making