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How to Approach Sensitive Topics with Pediatric Oncology Patients and Families NCCS Teleconference Janet Duncan, MSN, CPNP, CPON Pediatric Advanced Care Team Dana-Farber Cancer Institute and Children’s Hospital, Boston February 22, 2012 Palliative Care: What is it? Care for those with serious conditions or advanced illnesses that are life-threatening Comprehensive management of physical, psychosocial, and spiritual needs of the child and family Often includes disease-directed care Helping children to live as well as possible with optimal quality of life 53,287 children ages 0 to 19 died in 2007 15-19 yrs 25% 10-14 yrs 6% 0-1 - 55% 5-9 yrs - 5% 1-4 yrs - 9% Pediatrics, Annual Summary of Vital Statistics: 2008 Percentage of total childhood deaths (1-19 yrs) by major causes (2007) n = 24,149 Heart Disease 4% Chromosomal/ Congenital Abnom. 6% Resp Distress 3% Other 2% Cancer 10% Homicide & Suicide 23% Unint. Injuries 51% Pediatrics, Annual Summary of Vital Statistics: 2008 Percentage of total Infant deaths by major causes (2007) n = 29,138 Newborn Complications 14% Accidents 6% Chromosomal/ Congenital Abnom. 30% SIDS 12% Pregnancy Complications 14% Short Gestation 24% Pediatrics 2011, Annual Summary of Vital Statistics: 2008 PACT model of care Hope for cure, life extension, a miracle… Individualized blending of care directed at underlying illness and physical, emotional, social, and spiritual End-oflife care needs of child and family with continuous reevaluation and adjustment Hope for comfort, meaning… Bereavement care Optimal time for referral At diagnosis of life-threatening or serious illness “Anticipating the possibility of dying, in children with life-threatening illness, remains a challenge.” In reality Certain brain tumors, i.e. ATRT Stage IV Neuroblastoma Second stem cell transplant, high risk transplant Mack & Wolfe, 2006, Curr Opin Pediatr, Early integration of pediatric palliative care: for some children palliative care starts at diagnosis The Role of Palliative Care Optimize pain and symptom management Facilitate communication between family and the primary care team Enhance quality of life with emphasis on meaningfulness Improve coordination of care across settings Barriers to Optimal Care Rarity of childhood death Diversity of childhood illness Lack of developmentally appropriate assessment tools Geographic diversity Limited formal education Reimbursement issues Disenfranchised primary caregivers The emotional aspect Liben, Papadatou, Wolfe. 2007. The Lancet. Pediatric palliative care: challenges and emerging ideas Challenges Child dying is out of natural order We want to “do everything” to preserve life Is a “need” to protect Developmental stages of childhood Challenges Continued….. Child may move in and out of school, home, hospital, creating complex and ever changing needs Child is not legally competent, parents are surrogate decision makers Significant stressors on family Financial… loss of income Emotional….guilt Physical ….caring for other children, home, lack of sleep, lack of self care Core Ideals Open communication Intensive symptom management Timely access to care Flexibility Psychosocial and spiritual support Child oriented, family oriented Any place, any time Meaningful experiences Strategies Interdisciplinary team meets with family and allow the story to enfold Listen without prejudice and with empathy Team meeting, consult note, phone call communication with primary providers Build a trusting relationship and ~Maintain hope always~ 5 Questions Would you tell me about your child? What is your understanding of your child's illness? When thinking and making decisions about your child, what is most important to you? What are your hopes? What are your worries? Communication Honor family communication style Inherent desire to protect may result in constricted communication Children often know intuitively Encourage parents to prepare child and sibs Maintain trust through honest communication Lack of information may lead to anxiety and/or fear Communication to elicit spiritual & cultural context How do you understand your child’s illness? What is the meaning of pain and/or suffering for your family? Do you have any previous experiences with death in your family? What is your child’s understanding of his/her illness? What have you told your other children about the illness? Words to Avoid Forbidden Words/Concepts: What would you like us to do? Alternatives: Based on our understanding of your goals, we would recommend… The parents signed a DNR The patient is DNR A resuscitation status order was placed in the chart Withdraw support Focus on treating symptoms and comfort not using artificial ventilation, nutrition/hydration Narcotics Pain medications such as morphine, opioids Communicating With Patient/Family “There is nothing more we can do.” “We have come to that point where there are no medicines that we know of that can help stop the disease.” “We are hoping for the best but need to prepare in case things don’t go the way we want them to. We want to think together about what kind of interventions we all think make sense if your child becomes sicker.” “DNR Talks” vs. Goals of Care “We need to know what do you want us to do if….?” OR “What is most important to you for your child?” “Our recommendation as a team is….” “We will do everything possible to keep your child comfortable, minimize suffering, and allow for meaningful experiences for your child and your family.” HOPE Parents can and do hold dual hopes Hope for life extension, cure, miracle Hope for comfort, meaning “Although physicians sometimes limit prognostic information to preserve hope, we found no evidence that prognostic disclosure makes parents less hopeful. Instead, disclosure of prognosis by the physician can support hope, even when the prognosis is poor.” MackJ et al, J Clin Oncol, 2007. Understanding of Prognosis Among Parents of Children With Cancer: Parental Optimism and the Parent-Physician Interaction In Summary Anticipate needs of child and family, both physical and psychological Facilitate communication between child and family Facilitate communication between family and medical system and community Access resources in the community Help children live as well as possible for as long as possible