1. Decision Making in Pediatric Palliative Care Scott Maurer, MD Assistant Professor of Pediatrics University of Pittsburgh School of Medicine Medical Director, Supportive Care Program 5 November 2015

2. Overview  Medical decision making at the end-of-life  Understanding the Difficulty  Goal Setting in Palliative Care  How to approach difficult decisions  How can we support families and patients?  Advance care planning  Care coordination  Bereavement support

3. The (un)nature of the situation  Death in childhood is rare  We are not designed to bury our children  End-of-life decision making for children is not natural

4. Decision Making  Parents make many decisions for their children, but the most difficult are:  To enroll on Phase I therapy  DNR Status  Withholding/withdrawing artificial life-sustaining therapies  Discontinuation of cancer directed therapy Hinds, PS, et al. Cancer Nurs. 2001.

5. The issue of regret  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 Mack, J., et al. J Clin Oncol. 2008. Wolfe, J., et al. J Pain Symptom Manage. 2008. Kreicberges, U., et al. NEJM. 2004.

6. Morbidity in the bereavement period  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 Lannen, PK., et al. J Clin Oncol. 2008.

7. The Role of 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 Hinds, PS., et al. J Clin Oncol. 2009.

8. What is a “good parent” anyway?  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  Prevents suffering  Teaches moral values Hinds, PS., et al. J Clin Oncol. 2009.

9. 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, S, et al. J Clin Oncol. 2010

10. What do parents want? Parents want us to provide thoughtful care at the end-of-life:  Support the decisions they make.  Treat their child “the same.”  Make sure their child doesn’t suffer. They also want us to know how much they appreciate the care we provide. Maurer, S, et al. J Clin Oncol. 2010

11. Setting Goals Approaching Difficult Decisions

12. A framework for decision making

13. Hope and Prognosis  Universally parents want their physician to be honest while providing hope  Parents are more likely to feel hopeful when they recalled detailed prognostic discussions  Increased disclosure correlates with  Increased trust  Decreased emotional distress Mack,et al., J Clin Oncol, 2007

14. A framework for decision making

15. 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

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

17. A framework for decision making

18. Decisions Advance Care Planning Symptom Control Social, Emotional, & Spiritual Care Care Coordination Bereavement Care

19. Advance Care Planning  What are the medical decisions that this family needs to make?  Withholding disease directed therapy?  Participating in a clinical trial?  Withdrawing or withholding treatments with curative intent?  Do not resuscitate (DNR)?  Preferred location of death

20. The Gray Zone Giving a Choice Making a Recommendation

21. Symptom Control  Enumerate symptoms that are distressing to the child and family  Offer suggestions to manage each symptom regardless of its cause  Interventions must be considered in the context of the goals of care

22. Social, Emotional, Spiritual Care  Need for Psychologist involvement  Need for increased Social Work involvement  Need for Child Life involvement  Need for family counseling  Need for increased Chaplain involvement  The importance of talking

23. Care Coordination  Integrate the plan of care  Share plan across disciplines

24. Inpatient Medical Team Social workChild Life Spiritual Care Primary medical team Family/Patient Supportive Care Nutrition Pharmacy Nursing Rehab Services

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

26. Bereavement Care Dealing with the aftermath

27. Helping Bereaved Families  More intense grief is associated with the death of a child when compared to the death of a spouse or a parent  Bereaved parents have increased risk of:  Anxiety  Depression  Suicidal ideation  Prolonged grief  Poor quality of life  Poor social function Middleton, et al. Aust NZ J Psych. 1998. Hendrickson. Pall Support Care. 2009. Rosenberg, et al. PBC. 2012.

28. Siblings  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

29. Modifiable Factors  Parents with more distress:  Believed their child was suffering  Noted significant financial concerns  Noted treatment goals which weren’t well aligned with the goal of care  Siblings with more distress:  Had poor communication with parents at and after the time of death  Felt unprepared for their sibling’s death  Did not have an opportunity to say goodbye Rosenberg, et al. JAMA Peds. 2013 Rosenberg, et al. JPSM 2014.

30. New Standards of Care  Legacy building  Links to local mental health resources  Access to other bereaved parents  Spiritual support  Reduction of financial burdens  Access to support for a minimum of 13 months  Connectivity to the treating institution  Opportunity for personal growth  Education and support of staff

31. Patient and family support: Prior to the death  Good bereavement care begins at the time of consult  Early palliative care involvement  Legacy building  Companion patient and family in grief  Interdisciplinary Team Approach

32. Family support: At the time of the death  Family time with their child  Mementos/Legacy Building  Sibling Support  Leaving without their child

33. Family support: Bereavement follow up  13 Month follow up  Regular contact with families via phone, e-mail, or in person  Provision of local resources  Grief groups  Local mental health providers  Autopsy Review with the physician and consultants  Memorial Service  Legacy opportunities  Volunteerism  Fund raising  Education

34. Support and Education of Staff  Support  Scheduled debriefings for nursing staff on various floors and clinics  Emergency debriefings after acute events  Education:  Empowerment of staff for:  Care of patients  Care of parents/family  Care of self

35. Questions