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

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

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

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

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

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

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”

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

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

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

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

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

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)

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

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

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

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

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

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

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

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

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!!!!!!!!!!!!!

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

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

Treatment decision-making www.seattlechildrens.org/.../Decision_Making_Tool.pdf