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

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

3. MORTALITY RATES USA Age Group Number ‘03 %Change’79-’03
Annual Summary of vital statistics-1997 & 2003; Pediatrics 1998; 102: , Pediatrics 2005; 115:
Adding in infants, > 50,000 children die every year in USA

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

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

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

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

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

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.

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

11. NEW MODEL OF INTEGRATED CARE

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

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

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

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

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

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

18. HOSPICE AND PALLIATIVE CARE Are they the same?
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

19. Survey: 117 nurses and 81 physicians Commonest Perceived Barriers:
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

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

21. PAIN AND PALLIATIVE CARE
80% of cancer patients have pain
60% have enough pain to require opioid analgesia
Irene Higginson (1998)

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

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

24. OPIOIDS IN PALLIATIVE CARE

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

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

28. Liben. Journal of Palliative Care. 12(3):24-8, 1996
“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

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

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
Limited education includes:
Belief systems
Fatalism
Inability to access opioids
and other pain medicine

31. 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

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

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

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 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

35. 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

36. 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

37. Angel

39. Moving van

40. 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

41. 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

42. KEY ISSUES TO BE ADDRESSED
Opioids
Education and Training
Implementation of Palliative Care Services

43. IMPLEMENTATION OF PALLIATIVE CARE
Centers of Excellence
Regional hospitals
Primary Health care centers
Community services – home health care services

44. 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

45. 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

46. ‘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

47. THANK YOU!