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Session1Anintroductiontochildren’spalliativecare,andwhoneedsCPC

Learning outcomesBy the end of the session participants should:• Understand the core principles of children’s

palliative care as expressed in the WHO and Together for Short Lives (previously ACT) definitions of palliative care for children.

• Be able to identify the differences between adult and children’s palliative care.

• Be able to identify different categories of diagnoses of children requiring palliative care.

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Why we need children’s palliative care• Estimated global number of children needing

palliative care is >7 million• Greatest number died from perinatal conditions

(67.7%)• 5% of these children are in Europe (the greatest in

the South East Asian Region)• 97% of children needing palliative care at the end of

live belong to low and middle income groups

(WPCA 2013)

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Why we need children’s palliative care (2)

(WPCA 2013)

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Global need for CPC• TotalNeed:21.644Million

• SpecialistNeed:8.163Million

• 44.42per10,000children

• Range– 21- >100per10,000children

• Important–notbasedonmortalityfigures

(Connoretal2017) 5

What is the status of children’s palliative care in Europe?

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• Even where cure is theoretically possible, it is often not realistic owing to:• Uneven distribution of services• Children presenting late• Expense• Awareness• Technical skills and expertise

• Therefore children’s palliative care is even more important

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What is a Child?What is Palliative Care?

Brainstorm

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What is a child?

• From the perinatal period

• Neonates• Infants• School–aged

children• Adolescents• Young adults

• Upper Age? 10/12/17/18/27/32/? 10

What is Palliative Care?• The word “palliate” comes from

the Latin word “pallium” which means cloak.

• Symptoms are ‘cloaked’ with treatments whose primary aim is to provide comfort even if cure is not possible.

“May you be wrapped in tenderness my brother, as if in a cloak” the

Qur'an

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WHO definition of palliative care

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

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Palliative care…• Provides relief from pain and other distressing

symptoms; • Affirms life and regards dying as a normal process; • Intends neither to hasten or postpone death; • Integrates the psychological and spiritual aspects of

patient care; • Offers a support system to help patients live as actively

as possible until death;

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Palliative care cont…• Uses a team approach to address the needs of

patients and their families, including bereavement counselling, if indicated;

• Will enhance quality of life, and may also positively influence the course of illness;

• Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

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What is children’s palliative care?

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It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.

• Traditional palliative care services model

DIAGNOSIS

ACTIVEAGGRESSIVE

INTENT

PALLIATIVEINTENT DE

ATH

BEREAVEMENT

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BEREAVEMENT

DIAGNOSIS

ACTIVEAGGRESSIVE

INTENTPALLIATIVEINTENT

DEATH

Modifiedintegratedpalliativecareservicesmodel(Frager,1997)

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(Hawley2014)

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Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.

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It can be provided in tertiary care facilities, in community health centres...

21 …and even in the child’s [own] home. 22

The Together for Short Lives definition adds…

• It focuses on enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite and care through disease, death and bereavement.

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What are the differences between children’s and adult palliative care?

• Discuss

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Children are not small adults. They think and behave differently to the way that adults do.

Someuniquecharacteristicsofpaediatricpalliativecare

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Children are developing and maturing all the time so each child will be at a different age and different stage of development.

So…onesizedoesnotfitall!

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Things to consider when working with children….• Communication with children changes as they mature

and develop• Children’s understanding of death and dying differs

according to age and developmental stage• Ethical dilemmas may be different and more difficult• Families of dying children have different social roles• Experiences of bereavement change with age• Subtly different challenges face professionals dealing

with dying children • Children tend to have a broader range of people

involved in their care28

Medications and dosages are more complex in children.

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Children have more complex and diverse illnesses and diseases

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Spectrumofdiseases…..

Geneticdiseases

Metabolicconditions

Congenitalconditions

Unusualsyndromes

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Other differences include:• Someconditionsmaylastforseveral

years• Symptomspresentdifferentlyinchildren• Symptomassessmentmaybedifficultin

pre-verbalchildren• Childrenaredependentonadultsforcare

anddecisionmaking• Familyinteractionscanbecomplex

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• Childrencanbecrueltooneanother• Childrenhaveeducationalneedsandalsohavetherighttobegiventhetimeandopportunityforplayandrecreation

• Dependingontheirage,developmentalstageandexperience,childrenhavedifferentperceptionsofillnessanddeathanddying.

Other differences (2)

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CPC can be more emotionally draining than adult palliative care

Death in childhood isnot seen as normal

The overlap between adult and children’s palliative care

CPC APC

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Whatconditionsareencompassedinchildren’spalliativecare?

Disease Classification• A proposed grouping system for life limiting and life-

threatening illnesses of childhood that would benefit from palliative care

• Similar diseases grouped together• Grouping is largely based on different disease trajectories

(pathways) which helps with care planning

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Category 1•Advancedorprogressivecancerorcancerwithareasonableprognosis•Irreversibleorganfailuresofheart,liver,kidneys

•Complexandacquiredheartdisease

•Severemalnutrition•PulmonaryTB•XDRandMDRTB•HeadinjurypostMVA

ChildwithLeukaemia

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Category I disease trajectory

Diagnosis

Treatment

Remission

Healthy

DeathTime

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Category I Category3

Remission

Diagnosis

Treatment

Relapse

Treatment

Death

Healthy

Time42

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Category 2

ChildwithAIDS

•Cysticfibrosis•Duchenne’sMuscularDystrophy

•HIV/AIDSinfectedonHAART•BiliaryAtresia•Neuro-degenerativeconditions•Renalfailurewheredialysisisavailable

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Category 2 disease trajectory

Diagnosis

Treatment

ComplicationsHealthy

DeathTime 44

Category 3•Battendisease•Mucopolysaccharidoses•Down’sSyndromewithseverecongenitalheartdisease

•Adrenoleukodystrophy(ALD)•Trisomy13and18•RenalFailure- nodialysisavailable

•Irreversibleorganfailure–nopossibilityofatransplant

Childwithaninbornerrorofmetabolism

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Category 3 disease trajectory

Diagnosis

Healthy

DeathTime 46

Category 4

ChildwithCerebralPalsy

•Multipledisabilitiessuchasfollowingabrainorspinalcordinjury

•Complexhealthcareneedsandahighriskofanunpredictablelife-threateningeventorepisode•SevereCerebralPalsy•FoetalAlcoholSyndrome•BirthAsphyxia•Down’sSyndrome•SickleCellAnaemia

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Category 4 disease trajectory

Diagnosis

Healthy

DeathTime 48

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Progressing

Diagnosis

Healthy

DeathTime

ComplicationsDemandsofadolescence

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Key concepts around the disease categories• Categorisation helps to make decisions on how

aggressive active disease focused treatment should be (dependant on resources)• Category I: chance of cure: may be quite aggressive,

may include ICU admissions (up to a point when Rx fails)

• Category 2: chance of reasonable QOL: usually aggressive as long as QOL is reasonable and not adversely affected by intervention.

• Category 3: no known cure, available treatments may be experimental, focus usually more on palliative care

• Category 4: non-progressive but life limiting: focus on rehab and maximizing potential thereby improving QOL

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KEY concepts (2)• Categorisation differs according to available resources

for example:• HIV:

• HAART available = Category 2 • HAART not available = Category 3

• Renal failure:• Renal transplant = Category I• Dialysis available = Category 2• No Rx available = Category 3

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KEY concepts (3)• Categorisation can change as disease progresses or

complications arise or with associated co-morbidities:• Acute Lymphoblastic Leukaemia

• In remission: Category I• Non-curable relapse: Category 3

• Downs Syndrome• Normal Heart: Category 4• Congenital heart disease not for surgery: Category 3

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Challenges to CPC development……

• Lackofpolicies• LackofrecognitionoftheneedforCPC

• Lackofintegrationforallages

• Lackofaccesstoeducation

• Lackofaccesstomedicines

• Lackofresources 53

Summary1. Thereisaneedforpalliativecareforchildren2. Palliativecareforchildrenshouldbeprovidedfrom

diagnosisrightthroughtodeathandintobereavement.3. Itisaboutholisticcare,andfocusesonqualityoflife.4. Children’spalliativecareisadevelopingarea5. Thetypesofchildrenseenisimportantissuestoconsider

whenthinkingaboutprovidingchildren’spalliativecare.

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Thank you

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