PALLIATIVE CARE IN PEDIATRIC PATIENTS

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PALLIATIVE CAREIN 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 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

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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 1021333-1349, Pediatrics 2005
115619-634 Adding in infants, gt 50,000 children
die every year in USA
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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

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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

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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

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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

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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

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• 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.

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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 PEDIATRICSUniversal
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

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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

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WHAT CONSTITUTES PALLIATIVE CARE?
Spiritual support
Emotional support
Comfort
Symptom control
Interpersonal Relationships and Communication
Social support
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WHO DELIVERS PALLIATIVE CARE?

• Palliative care is multidisciplinary
• Physician
• Palliative care trained nurse /nurse practitioner
• Social worker
• Spiritual counselor
• Child-life specialists
• Psychologist
• Family

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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

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WHERE IS PALLIATIVE CARE DELIVERED?
HOSPICE
HOSPITAL
PATIENT
HOME CARE
OPD
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HOSPICE AND PALLIATIVE CAREAre 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
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BARRIERS TO PEDIATRIC PALLIATIVE CARE PERCEPTION
OF PEDIATRIC HEALTH CARE PROVIDERS

• Survey 117 nurses and 81 physicians
• Commonest Perceived Barriers
• Uncertain prognosis 55
• Cure versus palliative care
• Family not ready to accept incurable condition
  51
• Language barriers 47
• Time constraints 47
• 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
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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

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PAIN AND PALLIATIVE CARE

• 80 of cancer patients have pain
• 60 have enough pain to require opioid analgesia
• Irene Higginson (1998)

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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

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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

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OPIOIDSINPALLIATIVE CARE
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Global Consumption of Morphine 1981-2000
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(No Transcript)
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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 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

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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

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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
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No specialized Palliative care team
patients
No Government support
Overburdened oncologist
Poor access to morphine
Unrecognized specialty
Lack of Training in Medical school
Few hospices and Trained nurses
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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

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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

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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 something serious is
  going on
• over time experience similar distress as older
  more informed children
• figure it out themselves
• non disclosure tends to make them feel isolated

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TALKING TO CHILDREN WHO ARE DYING

• One of the most daunting aspects of palliative
  care is talking to a terminally ill child
• Should the child be told?
• If so, by whom and how much?
• Challenges
• Childrens concept of death changes over time
• Highly variable from child to child
• This information should be used to adjust our
  approach to the child and guide the family

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TALKING TO CHILDREN WHO ARE DYING

• Studies have shown
• Dying children fare better when they know what is
  happening to them
• Dying children often know that they are dying,
  whether or not they have been told
• Children not informed of the gravity of their
  illness, feel isolated and alone
• Physician may not necessarily be the best person
  to talk to the child about death
• Children may benefit from concrete information
  about the actual and physical process of dying
• Some children may not want to talk about dying
• Children give clues through play, drawings,
  dreams and reference to family members and
  friends who have died

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Angel
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(No Transcript)
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Moving van
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SIBLINGS THE FORGOTTEN FAMILY MEMBERS

• Siblings of chronically ill, dying children are
  at risk of becoming forgotten
• Siblings feel isolated
• Parents frequently are absent
• Feel their own needs are no longer a priority
• Siblings are at high risk
• Subsequent school problems
• Problems with parent-child relationships
• Psychological and social problems following their
  siblings death

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GUIDELINES FOR ASSISTANCE TO SIBLINGS OF
CHILDREN WHO HAVE CANCER

• Include sibs in discussions of care from time of
  diagnosis through death of child, and beyond
• Protecting sibs by excluding them may cause
  long term harm
• Sibs should be included in discussions of
  end-of-life care
• Sibs should be included in funeral planning
• Resources should be made available to support
  sibs through their grief and bereavement

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KEY ISSUES TO BE ADDRESSED

• Opioids
• Education and Training
• Implementation of Palliative Care Services

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IMPLEMENTATION OF PALLIATIVE CARE

• Centers of Excellence
• Regional hospitals
• Primary Health care centers
• Community services home health care services

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EDUCATION AND TRAINING

• Identify leaders in education
• Deans of medical, nursing, pharmacy and social
  work schools
• Identify target audiences to ? awareness
• Media, public, spiritual leaders, patients and
  families, medical personnel
• Promote media and public advocacy
• Introduce palliative care in medical and nursing
  school curriculae
• Palliative care experts
• Visiting experts
• Specialized in and out of country training
• Educate family caregivers

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COMMUNICATION SKILLS TRAINING IN ONCOLOGY

• This is where Informatics can play a role
• Undergraduate courses in medical school and
  residency programs
• Observing more experienced colleagues in clinical
  situations
• Videotaping actual encounters and evaluating them
  later
• Role playing
• Interactive workshops

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Stop! Dont run away. I am scared. Talk to me.
I dont know what its like. You see Ive never
died before! Translated from Arabic-
courtesy Dr Brown
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THANK YOU!