PALLIATIVE CAREIN PEDIATRIC PATIENTS

AZIZA SHAD, MDAMEY DISTINGUISHED PROFESSOR OF NEURO-

ONCOLOGY AND CHILDHOOD CANCERDIVISION OF PEDIATRIC HEMATOLOGY

ONCOLOGY, BLOOD AND MARROW TRANSPLANTATION

LOMBARDI COMPREHENSIVE CANCER CENTERGEORGETOWN 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

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 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– 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

• 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

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

CURATIVE

PROLONGATION OF LIFE

DIAGNOSIS

PALLIATIVE

RELIEF OF SUFFERING

DD

ABRUPT TRANSITION TO HOSPICE

DEATH

NEW MODEL OF INTEGRATED CARE

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

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 Comfort

Social support

InterpersonalRelationships

andCommunication

Spiritualsupport

Symptom control

WHO DELIVERS PALLIATIVE CARE?

• 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

HOSPICE

HOME CARE

HOSPITAL

OPD

PATIENT

WHERE IS PALLIATIVE CARE DELIVERED?

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 andhospitalizations

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

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

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

OPIOIDSIN

PALLIATIVE CARE

Stjernsward & Clark, 2004

Global Consumption of Morphine 1981-2000

Saudi Arabia0.5323

Nepal 0.0010

Tanzania 0.0259

PAKISTAN 0.0551

U.S. 45.0822

India 0.0769 (2001)

PAKISTAN 0.0551

“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– 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

• 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 opioidsand other pain medicine

Poor access to morphine

Few hospices andTrained nurses

Unrecognizedspecialty

No Government

support

No specializedPalliative care team

Overburdenedoncologist

patients

Lack of Training in

Medical school

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

• 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

• 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 personnelPromote 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!