Pediatric Palliative Care Overview
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A talk I gave for the University of Kansas Grand Rounds for Pediatrics.
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Pediatric Palliative Care Overview
- 1. PEDIATRIC PALLIATIVE CARE: WHY AN INTERNIST NEEDS TO SEE PEDIATRIC PATIENTS Christian Sinclair, MD, FAAHPM – KC Hospice
- 3. Adult Pediatrics Palliative Care
- 4. Hospital • Consult • Designated beds Hospice-based • Dedicated team • Adult team w/ exp Pediatric Hospice • Independent • Dedicated team
- 5. Curative Care/ Disease Modifying Palliative Care
- 6. Patient Family Medical System
- 7. Patient Family Medical System
- 8. Life Progressive Inevitable Irreversible threatening conditions premature but non- + curative – curative death progressive potential potential Neuro- Cystic Cerebral Cancers degenerative Fibrosis palsy Batten Genetic Organ Failure San Filippo Disease disorders
- 9. Life Progressive Inevitable Irreversible threatening conditions – premature but non- + curative curative death progressive potential potential Advanced Cancers ALS Lung Stroke Cancer Pancreatic COPD Sepsis Dementia Cancer CHF
- 10. Chronic Children who complex die conditions Pediatric Palliative Care Life- Life-limiting threatening
- 11. Peds Deaths Peds Hospice
- 12. All Children All Children All Infants All Infants 1-19yo 1-19yo w/CCC w/CCC • Accidents • Malignancy • Congenital • Cardiac (32%) • Assault (43%) • LBW • Congenital • Malignancy • Neuromuscular • SIDS (26%) • Suicide (23%) • Birth • Pulmonary • Congenital • Cardiac (17%) complications (17%) • Chromosomal • Injury • Neuromuscular (14%) • Cardiac • Neurologic
- 13. Percentage of Deaths at Home Age Group 1989 2003 0-19 years 10% 18% Infants 5% 7% 1-9 years 18% 31% 10-19 years 18% 32%
- 14. Contacts University of Kansas Medical Center Kathy Davis, PhD Karin Porter-Williamson, MD Kansas City Hospice / Carousel ChristianSinclair, MD, FAAHPM Patty Poore, RN, CHPN
- 15. 1 • I am seriously ill 2 • I am seriously ill but will get better 3 • I am always ill but will get better 4 • I am always ill but will not get better 5 • I am dying
- 16. 0-2 years • Awareness of separation, tension • Provide physical comfort, familiar people and objects 2-6 years • Death as reversible, sleeping, magical thinking • Concrete information, dispel misconceptions 7-12 years • Death as final, personal, unpredictable • May want graphic information • Inquire for fears, encourage access to peers 12+ years • Death as final, universal, but distanced • May address unrealized plans, explanations • Allow for emotions and privacy, support independence
- 17. Privacy, Involve others, Sit Setting down, Attentive, Calm, Listening, Ava ilable Perception Before you tell, ask Invitation Respect the patient’s right to know or refuse information Knowledge Use lay language, avoid technical terms, give in small amounts Empathy Listen for and identify emotions Strategy Make clear expectations about the and Summary plan
- 18. Assess Symptom Assess Treat Side Effects Assess Efficacy
- 19. Opioid Myths Respiratory depression Constipation Addiction
- 21. Key CHiPPS Recommendations Sole admission criteria to pediatric palliative care = pt not expected to survive to adulthood Interdisciplinary approaches address the whole person and family Provisions of support for staff who care for children with life- limiting illness Post-death care needs to be integrated with health care design and funding Financial incentives for pediatric palliative care must be developed Support for pediatric assent and the mature minor doctrine Community education regarding pediatric palliative care and DNR orders http://bit.ly/DVtzB
- 22. Adult Pediatrics Palliative Care
- 24. Key Reading • Friebert S. NHPCO Facts and Figures: Pediatric Palliative and Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization, April 2009. • When Children Die: Improving Palliative and End- of-Life Care for Children and Their Families. 2003 Board on Health Sciences Policy. • Oxford Textbook of Palliative Care for Children • The Hospice and Palliative Medicine Approach to Caring for Pediatric Patients – UNIPAC series - AAHPM
- 25. Online Resources for Pediatric Palliative Care Fast Facts: http://bit.ly/cj9UJ NHPCO Pediatric Palliative Care Standards: http://bit.ly/4qpV9 NHPCO Pediatrics Facts & Figures: http://bit.ly/Dj7oX Pallimed: http://www.pallimed.org
Notas do Editor
- Increase the knowledge and skills of pediatricians when approaching palliative care challenges by improving self-confidence about symptom control and communication.Utilize communication skills in palliative care situations by highlighting methods already honed by pediatricians when dealing with surrogate decision makers.Recognize areas for improvement in teaching and practice of pediatrics for symptom control Several authors suggest that many of the skills required to provide good quality palliative care are “generic skills that are fundamental to the practice of medicine in any clinical sphere . . .” [5]. In his critical review of palliative care education, MacDonald [6] comments that palliative medicine is often. . . listed in the litany of special interest groups that have worthy issues that should be discussed, but for which there is little room in the curriculum. But the principles of palliative care mirror the perceived changes in medical education which deans generally support. For example, who would disagree that our medical students shouldSpend more time in the community and in the homes of patientsDevelop a sense of whole person care and move away from a single minded interest in the biology of diseaseLearn to work in health care teamsDevelop improved skills in communication, andConsider medical issues in ethical termsViewed in this light, palliative care education does not provide the student with information on a “special interest”; rather, the student has the opportunity to work in an environment fulfilling most of the goals of basic medical education. Palliative care is not a competitor, but rather a means to reinforce common ideals.It is within a broad framework that the future of pediatric palliative care education must be viewed.
- The word consilience was apparently coined by William Whewell, in The Philosophy of the Inductive Sciences, 1840. In this synthesis Whewell explained that, \"The Consilience of Inductions takes place when an Induction, obtained from one class of facts, coincides with an Induction obtained from another different class. Thus Consilience is a test of the truth of the Theory in which it occurs.\"
- Pediatric Palliative Care is a philosophy and a methodCircles of PC and Hospice transforming to concurrent modelInterdisciplinaryPediatric palliative and/or hospice care (PP/HC) is botha philosophy and an organized method for deliveringcompetent, compassionate, and consistent care tochildren with chronic, complex and/or life-threateningconditions and their families. This care focuses onenhancing quality of life, minimizing suffering,optimizing function, and providing opportunities forpersonal and spiritual growth. Planned and deliveredthrough the collaborative efforts of an interdisciplinaryteam with the child, family and caregivers as itscenter, PP/HC can and should be provided along withconcurrent disease-modifying therapy or as the mainfocus of care. FROM NHPCO
- Similarities Between Adults and ChildrenFamilyDistressOften working with proxy decision makersNeed for a coordinated multi-agency approachPatient FactorsThreat to lifeSymptoms impede ADLEmotional impactShielding of the vulnerable from informationpotentially limited communicationWide age rangesMedicalOff-label use of medicationsWorking with dose ranges other parts of medicine are not comfortable withEthical challenges
- DifferencesPatient Range of terminal illnesses Trajectories of illness Death is relatively rare Developmental factors influencing pharmacology and physiology Developmental factors influencing cognitive and emotional understandingSystem Clinical models of delivery Funding mechanisms Research paradigms Educational initiatives Emerging autonomy Emotional strains on system/staff
- PhysicalPsychologicalSocial/ EducationalSpiritual
- PhysicalPsychologicalSocial/ EducationalSpiritual
- ChronologicalDisease typePrognosticStatisticsChildren who dieChronic complex conditionsSpecial health care needs 10million 14%Life-limitingLife-threatening
- 2.5million deaths in the US (2005)36% of deaths while under hospice care53k deaths under age 19 (2.2%)50% under age 110% of deaths while under hospice care1900 30% of deaths less than 5 years of ageAccording to the Annual Summary of Vital Statistics,in 2005 (the most recent year for which complete dataare available) there were 2.5 million deaths (2,447,903)in the United States; as expected with medical progress,this represents the lowest-ever age-adjusted rate (798.8deaths/100,000 US standard population).1 Nevertheless,the number of patients receiving hospice care has beenincreasing. In fact, 1.2 million US patients received hospicecare in 2005 and 1.3 million in 2006. Thus, 36% of allpatients who died in the US in 2006 were under the careof a hospice program.2 With 53,552 total deaths, childrenaged 0-19 years accounted for 2.2% of all deaths in 2005 –this is in stark contrast to the year 1900 in which 30% ofall deaths occurred in children less than 5 years of age.3
- Current studies exhibit variation, but overall mostchildren are still dying in the hospital, and most in anintensive care unit (ICU) setting. Historic data indicatesthat 70% of families would choose for their child to die athome if they had adequate support.
- The private worlds of dying childrenBy Myra Bluebond-Langner, 1978. Princeton University Presshttp://bit.ly/16wWIN
- http://www.flickr.com/photos/ivanomak/1069120304/ by Ivan Makarovhttp://www.flickr.com/photos/adwriter/398229620/ by Adwriterhttp://www.flickr.com/photos/tim_d/79840349/ by Tim Dhttp://www.flickr.com/photos/jikamajoja/2749038683/ by jikamajoja
- Palliative care as a competency is considered “somewhat” to “very important” by 78.1 percent of the program directors surveyed.Only 38.2 percent of program directors believe that their graduating residents are competent in pediatric palliative care.According to program directors, learning of palliative medicine and end-of-life care is best when delivered informally at the bedside of patients and during rounds.Eighty-two percent of directors believe that palliative care education should be continuous throughout their residency education.Scheduled or elective palliative care experiences are rarely available.
- Key CHIPPS Recommendations:
- Pediatric Palliative Care is a philosophy and a methodCircles of PC and Hospice transforming to concurrent modelInterdisciplinaryPediatric palliative and/or hospice care (PP/HC) is botha philosophy and an organized method for deliveringcompetent, compassionate, and consistent care tochildren with chronic, complex and/or life-threateningconditions and their families. This care focuses onenhancing quality of life, minimizing suffering,optimizing function, and providing opportunities forpersonal and spiritual growth. Planned and deliveredthrough the collaborative efforts of an interdisciplinaryteam with the child, family and caregivers as itscenter, PP/HC can and should be provided along withconcurrent disease-modifying therapy or as the mainfocus of care. FROM NHPCO
- Financial assistance for young families with limited resourcesEducational accessAdaptive equipmentPsychosocial support for families including siblingsTransition servicesAging patients outliving CCCRespite carePerinatal careUntested/unlabled medications for childrenGeographic spreadSpecialized workforce needsCultural and educational barriers for health care accessSudden illness/traumaFirst respondersAccepting death as outcome