palliative care in pediatric patients aziza shad, md amey distinguished professor of neuro- oncology...

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  • Slide 1
  • 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
  • Slide 2
  • INTRODUCTION Until recently, the focus of medical training has been on the investigation, diagnosis and treatment of disease often at the expense of caring for pain and suffering of the child Result: improved cure rates in cancer, cystic fibrosis and infectious diseases
  • Slide 3
  • MORTALITY RATES USA Age Group Number 03 %Change79-03 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 vital statistics-1997 & 2003; Pediatrics 1998; 102:1333-1349, Pediatrics 2005; 115:619-634 Adding in infants, > 50,000 children die every year in USA
  • Slide 4
  • THE CONSEQUENCES More than 500,000 children continue to live with life-threatening, complex medical conditions Increased suffering in children and their families Unrelieved pain and other symptoms Significant emotional and spiritual morbidity Difficult care coordination Limited care continuity Inconsistent hospice care Poor Medicare reimbursement Lack of experienced health care practitioners
  • Slide 5
  • FACTS ON DEATH AND DYING Wolfe et al in a recent study found that: Most children who die of cancer experience substantial suffering (89%) in the last month of life Fatigue Pain Dyspnea The majority of children die in the hospital Hospice care is a very small piece of end-of-life care for children Is usually provided at home
  • Slide 6
  • CHILDREN STILL DIE A different kind of care is therefore required! CARE THAT TARGETS THE COMFORT AND WELL BEING OF THE CHILD, NOT THE DISEASE
  • Slide 7
  • PEDIATRIC PALLIATIVE CARE Definition Epidemiology of childhood death Obstacles to providing palliative care Specific aspects of palliative care Relief of physical, emotional, social and spiritual suffering Communication with dying children and their families Preparation of families for the death of a child Help with decision making Bereavement
  • Slide 8
  • WHAT IS PALLIATIVE CARE? It is the relief of physical, emotional, social and spiritual suffering in children and their families from the time of diagnosis to cure or death Not restricted to End of Life care
  • Slide 9
  • The American Academy of Pediatrics supports an integrated model of palliative care in which components of the program are introduced at the time of diagnosis, whether or not the outcome ends in cure or death.
  • Slide 10
  • OLD MODEL OF CARE CURATIVE PROLONGATION OF LIFE DIAGNOSISDIAGNOSIS PALLIATIVE RELIEF OF SUFFERING D ABRUPT TRANSITION TO HOSPICE DEATHDEATH
  • Slide 11
  • NEW MODEL OF INTEGRATED CARE
  • Slide 12
  • AMERICAN ACADEMY OF PEDIATRICS Universal Principles of Pediatric Palliative Care Palliative care programs should be available for children with life-threatening diseases, not just those in whom death is imminent Life-prolonging treatment and palliative care are not mutually exclusive Care should be available to children whether they are at home or in the hospital Interdisciplinary palliative care teams should be available for the child 24 hours a day The unit of care is the child and family Bereavement care should be available for families of children who die
  • Slide 13
  • WHO QUALIFIES FOR PALLIATIVE CARE? All children with complex chronic conditions (CCC) qualify for palliative care services CCC: any medical condition that lasts for at least 12 months (unless death intervenes) and involves one or several organ systems severely enough to require specialty care Neuromuscular disease, cardiac abnormalities, renal failure, metabolic abnormalities, chromosomal abnormalities, cancer and blood disorders
  • Slide 14
  • WHAT CONSTITUTES PALLIATIVE CARE? Emotional support Comfort Social support Interpersonal Relationships and Communication Spiritual support Symptom control
  • Slide 15
  • WHO DELIVERS PALLIATIVE CARE? Palliative care is multidisciplinary Physician Palliative care trained nurse /nurse practitioner Social worker Spiritual counselor Child-life specialists Psychologist Family
  • Slide 16
  • ROLE OF THE PALLIATIVE CARE TEAM Physical, emotional, spiritual and social support Communication with the child and family Guidance in decisions at end of-life Bereavement
  • Slide 17
  • HOSPICE HOME CARE HOSPITAL OPD PATIENT WHERE IS PALLIATIVE CARE DELIVERED ?
  • Slide 18
  • HOSPICE AND PALLIATIVE CARE Are they the same? Hospice Philosophy of care for a terminally ill child; focused exclusively on comfort for whatever time remains Can be delivered at home, in hospital, a dedicated hospice unit Level of care defined and reimbursed by health care insurance Palliative care Comfort-oriented care with broader applications Not reserved exclusively for the terminally ill child Appropriate for those in transition from curative to hospice care, or still receiving curative or life- prolonging therapy Most children are not enrolled in hospice programs because such programs require for-going life prolonging therapy, emergency department visits and hospitalizations
  • Slide 19
  • BARRIERS TO PEDIATRIC PALLIATIVE CARE PERCEPTION OF PEDIATRIC HEALTH CARE PROVIDERS Survey: 117 nurses and 81 physicians Commonest Perceived Barriers: Uncertain prognosis55% Cure versus palliative care Family not ready to accept incurable condition 51% Language barriers47% Time constraints47% Frequent barriers:30% Family preferences for more life-sustaining treatment compared to staff members Staff shortages Problems with communication between family and staff, within staff regarding treatment goals Insufficient education in pain and palliative care Absence of a palliative care team Kramer et al
  • Slide 20
  • PALLIATIVE CARE IS RELIEF OF PHYSICAL SUFFERING Pain Dyspnea Excess secretions Seizures Oral symptoms Bleeding Nausea and vomiting Psychological distress Swallowing difficulties Cough Muscle spasm
  • Slide 21
  • PAIN AND PALLIATIVE CARE 80% of cancer patients have pain 60% have enough pain to require opioid analgesia Irene Higginson (1998)
  • Slide 22
  • Pain management Understanding of the pediatric doses Use of the analgesic ladder Keep the approach simple and consistent use the oral and sublingual route in most cases Work with the child and the family to choose medication to ensure compliance
  • Slide 23
  • Cancer Pain Management 80-90% of cancer pain can be relieved relatively simply by WHO guidelines Knowledge of treating uncomplicated pain is improving worldwide 10-20% remains difficult to treat using simple pharmacologic approaches
  • Slide 24
  • OPIOIDS IN PALLIATIVE CARE
  • Slide 25
  • Stjernsward & Clark, 2004 Global Consumption of Morphine 1981-2000
  • Slide 26
  • Slide 27
  • Saudi Arabia 0.5323 Nepal 0.0010 Tanzania 0.0259 PAKISTAN 0.0551 U.S. 45.0822 India 0.0769 (2001) PAKISTAN 0.0551
  • Slide 28
  • In areas such as the pharmacodynamics of opiates, where good data already exists, it remains unacceptable to have children suffer because of misperceptions and incorrect assumptions about appropriate drug use Liben. Journal of Palliative Care. 12(3):24-8, 1996
  • Slide 29
  • SOME FACTS ABOUT MORPHINE If a country has a supply that includes 30% IR morphine 60% SR morphine 5% parenteral morphine 5% other opioids The majority of the patients can be kept reasonably pain free Oral morphine solution (generic) is the least expensive opiate available today
  • Slide 30
  • Barriers to Delivery of Palliative Care in Developing Countries Lack of services Poverty & Stigmatization Limited education Unrealistic fears regarding opioids Inadequate access to healthcare Poor governmental policies regarding end-of-life care Inability to access opioids and other pain medicine
  • Slide 31
  • Poor access to morphine Few hospices and Trained nurses Unrecognized specialty No Government support No specialized Palliative care team Overburdened oncologist patients Lack of Training in Medical school
  • Slide 32
  • PALLIATIVE CARE IS RELIEF OF SOCIAL, EMOTIONAL AND SPIRITUAL SUFFERING Social isolation separation from peers, friends Child-life specialists, teachers Emotional issues anxiety about disease, death and depression Play therapy, art therapy, music therapy Psychologist, psychiatrist Anti anxiety medication, anti depressants Spiritual issues Seriously ill children should undergo a spiritual assessment
  • Slide 33
  • PSYCHOSOCIAL ASPECTS OF PEDIATRIC PALLIATIVE CARE Communication with child and family Siblings Talking about death Preparing the family for dying Bereavement for family De-briefing for staff
  • Slide 34
  • COMMUNICATING WITH CHILDREN Children are often told little about their illness to protect them from fear and feeling of being overwhelmed cultural issues, family hierarchy, relationships among family members influence decisions on how much to tell younger children have limitations in reasoning Most children know when