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

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

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

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

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. 2001.

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

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

So, How do we help? © 2015 Mitra Farmand

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?

Feeding the Meter: The benefit of NOT having an agenda

A framework for decision making Hope Prognosis Decisions Expectations

A framework for decision making Prognosis Hope Expectations Goals

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. 2011.

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

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

A framework for decision making Prognosis Hope Expectations Goals Decisions

Tools to Help you Along the way

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

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.

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?

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

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

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?

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?

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.

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?

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

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

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

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

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

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. 2016.

Some helpful Resources VitalTalk Quick guides for communication http://vitaltalk.org/resources/quick-guides/ It’s FREE in the app store Advance Care Planning Documents https://agingwithdignity.org/five-wishes/pediatric

Questions?