PALLIATIVE CARE
IN PEDIATRIC PATIENTS
AZIZA SHAD, MD
AMEY DISTINGUISHED PROFESSOR OF NEUROONCOLOGY AND CHILDHOOD CANCER
DIVISION OF PEDIATRIC HEMATOLOGY
ONCOLOGY, BLOOD AND MARROW
TRANSPLANTATION
LOMBARDI COMPREHENSIVE CANCER CENTER
GEORGETOWN UNIVERSITY HOSPITAL
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
MORTALITY RATES USA
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
Age Group
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
THE CONSEQUENCES
• More than 500,000 children continue to live with
life-threatening, complex medical conditions
• Increased suffering in children and their families
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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
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
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
PEDIATRIC PALLIATIVE CARE
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Definition
Epidemiology of childhood death
Obstacles to providing palliative care
Specific aspects of palliative care
– Relief of physical, emotional, social and spiritual suffering
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Communication with dying children and their families
Preparation of families for the death of a child
Help with decision making
Bereavement
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
• 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.
OLD MODEL OF CARE
ABRUPT TRANSITION TO HOSPICE
D
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A
G
N
O
S
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S
CURATIVE
PALLIATIVE
D
D
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E
PROLONGATION
OF
LIFE
RELIEF OF
SUFFERING
A
T
H
NEW MODEL OF INTEGRATED CARE
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
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
WHAT CONSTITUTES PALLIATIVE CARE?
Emotional support
Spiritual
support
Comfort
Symptom
control
Interpersonal
Relationships
and
Communication
Social support
WHO DELIVERS PALLIATIVE CARE?
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Palliative care is multidisciplinary
Physician
Palliative care trained nurse /nurse practitioner
Social worker
Spiritual counselor
Child-life specialists
Psychologist
Family
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
WHERE IS PALLIATIVE CARE DELIVERED?
HOSPICE
HOSPITAL
PATIENT
HOME CARE
OPD
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 lifeprolonging therapy
Most children are not enrolled in hospice programs because such programs
require for-going life prolonging therapy, emergency department visits and
hospitalizations
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
– Language barriers
47%
– Time constraints
47%
• Frequent barriers:
51%
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
PALLIATIVE CARE IS RELIEF OF
PHYSICAL SUFFERING
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Pain
Dyspnea
Excess secretions
Seizures
Oral symptoms
Bleeding
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Nausea and vomiting
Psychological distress
Swallowing difficulties
Cough
Muscle spasm
PAIN AND PALLIATIVE CARE
• 80% of cancer patients have pain
60% have enough pain to require opioid
analgesia
Irene Higginson (1998)
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
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
OPIOIDS
IN
PALLIATIVE CARE
Global Consumption of Morphine 1981-2000
Stjernsward & Clark, 2004
India
0.0769
(2001)
U.S.
45.0822
Tanzania
0.0259
PAKISTAN
PAKISTAN
0.0551
0.0551
Saudi
Arabia
0.5323
Nepal
0.0010
“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
SOME FACTS ABOUT MORPHINE
• If a country has a supply that includes
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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
Barriers to Delivery of Palliative Care in
Developing Countries
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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
patients
Poor access
to morphine
No specialized
Palliative care team
Overburdened
oncologist
Lack of
Training in
Medical school
No
Government
support
Unrecognized
specialty
Few hospices and
Trained nurses
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
PSYCHOSOCIAL ASPECTS OF
PEDIATRIC PALLIATIVE CARE
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Communication with child and family
Siblings
Talking about death
Preparing the family for dying
Bereavement for family
De-briefing for staff
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
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:
– Children’s 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
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
Angel
Moving van
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 sibling’s death
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
KEY ISSUES TO BE ADDRESSED
• Opioids
• Education and Training
• Implementation of Palliative Care Services
IMPLEMENTATION OF PALLIATIVE CARE
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Centers of Excellence
Regional hospitals
Primary Health care centers
Community services – home health care
services
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
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
‘Stop! Don’t run away. I am scared. Talk to me.
I don’t know what its like. You see – I’ve never died before!’
Translated from Arabic- courtesy Dr Brown
THANK YOU!