PALLIATIVE Consideration IN PEDIATRIC PATIENTS.


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Palliative consideration projects ought to be accessible for youngsters with life ... Interdisciplinary palliative consideration groups ought to be accessible for the youngster 24 ...
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PALLIATIVE CARE IN PEDIATRIC PATIENTS AZIZA SHAD, MD AMEY DISTINGUISHED PROFESSOR OF NEURO-ONCOLOGY AND CHILDHOOD CANCER DIVISION OF PEDIATRIC HEMATOLOGY ONCOLOGY, BLOOD AND MARROW TRANSPLANTATION LOMBARDI COMPREHENSIVE CANCER CENTER GEORGETOWN UNIVERSITY HOSPITAL

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INTRODUCTION Until as of late, the center of medicinal preparing has been on the examination, finding and treatment of ailment frequently to the detriment of looking after torment and enduring of the youngster Result: enhanced cure rates in malignancy, cystic fibrosis and irresistible ailments

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MORTALITY RATES USA Age Group Number \'03 %Change\'79-\'03 1-4 yr. 4,858 -48 5-9 yr. 3,018 -45 10-14 yr. 4,138 -32 15-19 yr. 13,812 -28 1-19 yr. 25,820 -38 Annual Summary of fundamental insights 1997 & 2003; Pediatrics 1998; 102:1333-1349, Pediatrics 2005; 115:619-634 Adding in babies, > 50,000 kids kick the bucket each year in USA

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THE CONSEQUENCES More than 500,000 kids keep on living with life-undermining, complex therapeutic conditions Increased enduring in kids and their families Unrelieved torment and different indications Significant enthusiastic and otherworldly bleakness Difficult consideration coordination Limited consideration coherence Inconsistent hospice care Poor Medicare repayment Lack of experienced social insurance specialists

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FACTS ON DEATH AND DYING Wolfe et al in a late study found that: Most kids who bite the dust of tumor experience generous enduring (89%) in the most recent month of life Fatigue Pain Dyspnea The dominant part of kids bite the dust in the doctor\'s facility Hospice consideration is a little bit of end-of-life watch over kids Is generally given at home

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CHILDREN STILL DIE An alternate sort of consideration is hence required! CARE THAT TARGETS THE COMFORT AND WELL BEING OF THE CHILD, NOT THE DISEASE

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PEDIATRIC PALLIATIVE CARE Definition Epidemiology of adolescence passing Obstacles to giving palliative consideration Specific parts of palliative consideration Relief of physical, passionate, social and otherworldly enduring Communication with kicking the bucket kids and their families Preparation of families for the demise of a kid Help with basic leadership Bereavement

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WHAT IS PALLIATIVE CARE? It is the alleviation of physical, enthusiastic, social and otherworldly enduring in youngsters and their families from the season of determination to cure or passing Not limited to \'End of Life\' consideration

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The American Academy of Pediatrics backings an incorporated model of palliative consideration in which segments of the system are presented at the season of analysis, regardless of whether the result closes in cure or demise.

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OLD MODEL OF CARE ABRUPT TRANSITION TO HOSPICE D I A G N O S I S CURATIVE PALLIATIVE DD DEATH RELIEF OF SUFFERING PROLONGATION OF LIFE

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NEW MODEL OF INTEGRATED CARE

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AMERICAN ACADEMY OF PEDIATRICS Universal Principles of Pediatric Palliative Care Palliative consideration projects ought to be accessible for youngsters with life-undermining sicknesses, not only those in whom demise is up and coming Life-dragging out treatment and palliative consideration are not fundamentally unrelated Care ought to be accessible to kids whether they are at home or in the healing center Interdisciplinary palliative consideration groups ought to be accessible for the kid 24 hours a day The unit of consideration is the kid and family Bereavement consideration ought to be accessible for groups of kids who bite the dust

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WHO QUALIFIES FOR PALLIATIVE CARE? All kids with complex perpetual conditions (CCC) fit the bill for palliative consideration administrations CCC: any therapeutic condition that goes on for no less than 12 months (unless passing intercedes) and includes one or a few organ frameworks seriously enough to require claim to fame care Neuromuscular sickness, heart variations from the norm, renal disappointment, metabolic irregularities, chromosomal anomalies, malignancy and blood issue

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WHAT CONSTITUTES PALLIATIVE CARE? Otherworldly bolster Emotional bolster Comfort Symptom control Interpersonal Relationships and Communication Social backing

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WHO DELIVERS PALLIATIVE CARE? Palliative consideration is multidisciplinary Physician Palliative consideration prepared medical attendant/attendant expert Social laborer Spiritual advocate Child-life pros Psychologist Family

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ROLE OF THE PALLIATIVE CARE TEAM Physical, enthusiastic, profound and social bolster Communication with the tyke and family Guidance in choices at end –of-life Bereavement

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WHERE IS PALLIATIVE CARE DELIVERED ? HOSPICE HOSPITAL PATIENT HOME CARE OPD

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Hospice Philosophy of administer to an in critical condition youngster; concentrated solely on solace for whatever time remains Can be conveyed at home, in doctor\'s facility, a devoted hospice unit Level of consideration characterized and repaid by human services protection Palliative consideration Comfort-situated consideration with more extensive applications Not saved only for the in critical condition kid Appropriate for those experiencing significant change from therapeudic to hospice care, or as yet getting healing or life-drawing out treatment HOSPICE AND PALLIATIVE CARE Are they the same? Most kids are not selected in hospice programs in light of the fact that such projects require for-going life delaying treatment, crisis office visits and hospitalizations

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BARRIERS TO PEDIATRIC PALLIATIVE CARE PERCEPTION OF PEDIATRIC HEALTH CARE PROVIDERS Survey: 117 attendants and 81 doctors Commonest Perceived Barriers: Uncertain prognosis 55% Cure versus palliative care Family not prepared to acknowledge serious condition 51% Language barriers 47% Time constraints 47% Frequent barriers: 30% Family inclinations for more life-supporting treatment contrasted with staff individuals Staff deficiencies Problems with correspondence amongst family and staff, inside staff in regards to treatment objectives Insufficient training in torment and palliative consideration Absence of a palliative consideration group Kramer et al

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Pain Dyspnea Excess discharges Seizures Oral manifestations Bleeding Nausea and retching Psychological trouble Swallowing challenges Cough Muscle fit PALLIATIVE CARE IS RELIEF OF PHYSICAL SUFFERING

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PAIN AND PALLIATIVE CARE 80% of tumor patients have torment 60% have enough agony to require opioid absense of pain Irene Higginson (1998)

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Pain administration Understanding of the pediatric measurements Use of the pain relieving stepping stool Keep the methodology basic and predictable utilize the oral and sublingual course much of the time Work with the kid and the family to pick solution to guarantee consistence

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Cancer Pain Management 80-90% of disease torment can be calmed generally essentially by WHO rules Knowledge of treating uncomplicated torment is enhancing overall 10-20% stays hard to treat utilizing basic pharmacologic methodologies

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OPIOIDS IN PALLIATIVE CARE

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Global Consumption of Morphine 1981-2000 Stjernsward & Clark, 2004

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India 0.0769 (2001) Tanzania 0.0259 U.S. 45.0822 PAKISTAN 0.0551 PAKISTAN 0.0551 Nepal 0.0010 Saudi Arabia 0.5323

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" In territories, for example, the pharmacodynamics of sedatives, where great information as of now exists, it stays unsuitable to have kids endure in view of misperceptions and wrong suppositions about proper medication use" Liben . Diary of Palliative Care. 12(3):24-8, 1996

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SOME FACTS ABOUT MORPHINE If a nation has a supply that incorporates 30% IR morphine 60% SR morphine 5% parenteral morphine 5% different opioids most of the patients can be kept sensibly torment free Oral morphine arrangement (bland) is the minimum costly sedative accessible today

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Barriers to Delivery of Palliative Care in Developing Countries Lack of administrations Poverty & Stigmatization Limited instruction Unrealistic fears in regards to opioids Inadequate access to human services Poor legislative approaches in regards to end-of-life consideration Inability to get to opioids and other torment pharmaceutical

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No specific Palliative consideration group patients No Government bolster Overburdened oncologist Poor access to morphine Unrecognized forte Lack of Training in Medical school Few hospices and Trained attendants

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PALLIATIVE CARE IS RELIEF OF SOCIAL, EMOTIONAL AND SPIRITUAL SUFFERING Social disconnection – division from companions, companions Child-life pros, instructors Emotional issues – uneasiness about infection, demise and dejection Play treatment, craftsmanship treatment, music treatment Psychologist, specialist Anti nervousness prescription, antidepressants Spiritual issues Seriously sick youngsters ought to experience an otherworldly appraisal

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PSYCHOSOCIAL ASPECTS OF PEDIATRIC PALLIATIVE CARE Communication with tyke and family Siblings Talking about death Preparing the family to dye Bereavement for family De-preparation for staff

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COMMUNICATING WITH Children are regularly enlightened small concerning their sickness to shield them from trepidation and sentiment being overpowered social issues, family chain of importance, connections among relatives impact choices on the amount to tell more youthful kids have restrictions in thinking Most kids know when something genuine is going ahead after some time experience comparative trouble as more seasoned more educated kids make sense of it themselves non divulgence tends to make them feel disengaged

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TALKING TO CHILDREN WHO ARE DYING One of the most overwhelming parts of palliative consideration is conversing with an at death\'s door kid Should the tyke be told? Provided that this is true, by whom and what amount? Difficulties: Children\'s idea of death changes after some time Highly variable from kid to youngster This data ought to be utilized to conform our way to deal with the tyke and aide the family

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TALKING TO CHILDREN WHO ARE DYING Studies have appeared: Dying kids admission better when they realize what is transpiring Dying kids regularly realize that they are kicking the bucket, regardless of whether they have been told Children not educated of the gravity of their sickness, feel detached and alone Physi

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