Pediatric palliative care

Ana Forjaz de Lacerda, MD, MSc

Pediatrics Department, Portuguese Institute of Oncology, Lisbon

Taskforce of Continued and Palliative Care, Portuguese Society of Pediatrics
Pediatric Taskforce, Portuguese Association of Palliative Care
Portuguese Observatory of Palliative Care
Pediatric Taskforce, European Association of Palliative Care

alacerda@ipolisboa.min-saude.pt
 Learning Objectives

• Understand the aims and goals of PPC

• Acknowledge the population of interest
• Recognize the needs of children with life-threatening /
life-limiting conditions and their families
• Become familiar with the current Portuguese scenario
What is Pediatric Palliative Care?
Paediatric Palliative care…
Pediatric palliative Care…
…is a basic human right.
(for 20+ million children worldwide)
 Provision Levels
Level Pediatrics1 Adults2
1
(none recognized)
65.6% 32%

2
(capacity building)
18.8% 10%

3
(localized / generalized) 9.9% 38.9%

4
(integration) 5.7% 19.2%

1 Knapp et al, 2011 2 WPCA, 2011

 Barriers to PPC provision

 lack of understanding of what PPC really is

 taboo around child death
 lack of trained personnel
 lack of expertise of adult providers
 insufficient access to medication
 insufficient research and evidence
o values (professionals & users)
o preferences (children & families)
o interventions (medical, psycho-social, spiritual)
o pharmacological studies
 Pediatric palliative care…

...is holistic and proactive care

for children and adolescents
who will not get better from their
condition.
 Paediatric Palliative care…
Pediatric palliative Care…

...is the active total care of the child's

body, mind and spirit, and also involves
(1998) giving support to the family.

It begins when illness is diagnosed,

and continues regardless of whether or not a child receives
treatment directed at the disease.

Effective palliative care … includes the family and makes use of

available community resources; it can be successfully
implemented even if resources are limited.

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

centres and even in children's homes.
Integration in the healthcare continuum
(WHA Resolution, 2014)

Tx of baseline illness
(e.g. chemotherapy)

Active medical Tx
(e.g. infections, fractures)

Symptom control
Bereavement
Psychological, social and spiritual support
care
Diagnosis Death

Support

End of life

Terminal

Adapted from Woodruff, 2004

 Pediatric palliative care…

Good death Good life

• No suffering... • Communication
• Bereavement • Decision making
care • Care planning
• Coordination
• Symptom
control
Who is PPC for?
 Surprise Question

Would you be surprised

if this child
would not survive to his/her
18th birthday?
Life-limiting / life-threatening conditions
Complex chronic conditions
“any medical condition that can be reasonably expected to last at least 12 months (unless death intervenes)
and to involve either several different organ systems or one organ system severely enough
to require specialty pediatric care and probably some period of hospitalization in a tertiary care center”
(Feudtner et al, 2000)
 Pediatric palliative care
disease categories

• Potentially fatal but curable conditions

• Conditions which cause a premature death but may have
long survivals if treated
• Progressive conditions with no chance of cure
• Irreversible non-progressive conditions,
which increase morbidity and the chance of a premature
death

ACT, 1997
Cancer
Intensive Care
Organ failures

Cystic fibrosis
Muscular dystrophies
Sickle cell disease

Metabolic conditions
Neuromuscular conditions
Severe cerebral palsy
Extreme prematurity
All children who will be born / live with
life limiting / threathening conditions
and complex healthcare needs

Children who are going to die

Children who are dying

All children who will be born / live with
life limiting / threathening conditions
and complex healthcare needs

Children who are going to die

Children who are dying

Why is it important?
 HOSPITAL/S 10 PROFESSIONALS

CHILD WITH
LL/LT
CONDITION

PRIMARY CARE 20 CLINIC VISITS / YEAR

 Families facing LL / LT conditions

Accepting
caring loss(es)
Daily living

maintaining
autonomy
maintaining
routines Planning the
future
 What do families want?

• Information
Preparation
• Care coordination
• Sibling support
• Caring at home:
– “how to” and practical help Support
– 24 / 7 / 365 support
– respite care
– financial help
Control
 Preferred place of care (death)
depends on evaluation and expectations

Level of Available Quality

suffering support of care

There isn’t “a” best choice, rather “the”

best choice for each child and family!
 What do children want?

How many children answer

“in the hospital”
when asked where they want to be?
Wolff & Wolff, 2008
 Shared decision making

Evidence Values

Professionals Child / Family

 Risks /
Benefits
Burdens

Spiritual
Emotional
Social
Financial
Medical

Quality
of
life
Parallel planning - “bow tie model”
Models of Care
Integration
Continuity
 Clinical heterogeneity (rare conditions)

Low prevalence & frequency

Pediatrics
Geographical dispersion

Age range
Craft & Killen, 2007
 Provision of PPC

Hospital/s
Symptom control

Home care
Pediatrics
Caregiver respite

Psycho-social support
Adults
End of life care
Primary
Care
Communit
y
Pediatric Multidisciplinary Team
 Team Goals
Aliviate
• physical, psycho-social and spiritual suffering

Improve
• quality of life

Promote
• informed decision making

Coordinate
• care across settings
 Team Actions

• child and family needs

Evaluate

• care goals
• levels of intervention
Discuss • DNR / AND orders

• Plan: care / treatment / medication

Prepare

• specialized team if complex / uncontrolled symptoms

Consider • use of primary care / community resources
 Guidelines for care provision
Needs assessment
• by the family and all involved healthcare professionals, including social services

Identification of coordinator (“gestor de caso”)

• someone the family trusts and has a connection with

Caregiver education and training

• formal and informal

Individualized, multidisciplinary, proactive and flexible care plan

• prepared after discussions involving all caregivers
• reviewed whenever conditions change
Sharing
• of information, records, guidelines

Care provision
• permanent (24/7/365)
• at home, whenever possible and wished for
Portuguese Scenario
Portugal – needs assessment, 2015
hospital based prevalence = 45: 10,000
(UK, 2012 – 32: 10,000)

Region Number of children (0-17y)

Portugal Mainland (45:10.000) 7.669
North (47:10.000) 2.863
Center (44:10.000) 1.577
A.M. Lisboa (47:10.000) 2.518
Alentejo (35:10.000) 411
Algarve (38:10.000) 304
Azores 226
Madeira 215
Portugal 8.110
Lacerda A et al, 2018 (in press)
.
 Children with CCC
in NHS hospital admissions
(PT Mainland, 2011-15)

Episodes
15,5% (64.918)

Days
29,8% (689.818)

Expenses
39,4% (243,6 milllion€)

Deaths
87,2% (1.539)

Lacerda A et al, Acta Med Port 2019; 32(7-8):488

 WHO Collaborating Centre
for Palliative Care, Policy and
Rehabilitation

Cause and place of death of children

and adolescents in a country
without paediatric palliative care
(Portugal, 1987-2011): an
epidemiological study
Ana Forjaz de Lacerda, MD, MSc

Bárbara Gomes, MSc, PhD

 Decrease in number of paediatric (0-17y)
deaths
2000
1800
N= 38,870
1600
Other medical causes
1400
Frequency

1200

1000
800
773
CCCs
600
400

200 Trauma 191

0
1987
1988
1989
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
2010
2011
Year of death 572
3,268

Follow us on twitter @csi_kcl www.csi.kcl.ac.uk

 Increase in proportion of deaths with
palliative care needs
60%
52.7% Other medical causes 55.2%
50%

40%
Percentage

30%
CCCs 33.4%
23.7%

20% 23.7%
Trauma
10% 11.4%

0%
1987
1988
1989
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
2010
2011
Year of death
N= 38,870
Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
 CCCs - ½ of deaths before 1st birthday

10
% 0-27d
10 29 28-364d
% %
1-5y
12 6-10y
% 11-14y
15-17y

17 22
% %

N= 10,571
Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
 CCCs - Increase in median age of death
(6 months to 4y3m)

Year of death

Follow us on twitter @csi_kcl www.csi.kcl.ac.uk

 CCCs - 2/3 of deaths due to cancer,
neuromuscular & cardiovascular conditions

Cancer

16 Neuromuscular
2 2% % 26
% Cardiovascular
%
2% Respiratory
3%
Metabolic
4
% Gastro-intestinal
20
Renal
25 %
% Hem & Imunodeficiency

N= 10,571 Other congenital

Follow us on twitter @csi_kcl www.csi.kcl.ac.uk

 CCCs – cause of death differs in infants
and older children

Cancer
Neuromuscular
Cardiovascular
Respiratory
Renal
Gastro-intestinal
Hem & Imunodef
Metabolic < 1 year ≥ 1 year
Other congenital

N= 10,571
Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
 Decreasing trend in home death
N= 38,870
90%
79.7%
80% Hospital
70% 65.8%
60%
Percentage

50%

40%

30%

20%
22.4%
Home
10.8%
10%
11.8% Other 9.4%
0%
1987
1988
1989
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
2010
2011
Year of death
----- directly standardised for age & gender
Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
 Currently similar proportion of home death
for major causes
40%
35.6% (n=275)
35%

30%
CCCs
Percentage

25%
20.2% (n=347)
20%
Other Medical Causes
15%
12.3% (n=8)

14.3% (n=111) 11.5% (n=22)

10% 10.1% (n=32)
Trauma
5%

0%
1987
1988
1989
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
2010
2011
Year of death
Follow us on twitter @csi_kcl www.csi.kcl.ac.uk
Morte em casa em Portugal, 2010:

50%

30%

12,5%
9,6%

Adultos (1) Crianças (2)

Preferência expressa Morte em casa Morte em casa por DCC
(1) Gomes et al, 2013 (2) Lacerda, 2014
 2018
2016 Hospital teams
Governmental (mandated by
Taskforce law)
2015
PPC Units
www.cuidandoju
ntos.org.pt
2014 Optional Unit at
NMS
Governmental
Taskforce

2013
Pediatric Taskforce
PC Taskforce
PG course (124h)
Basic Courses (24h)
 Report for the
Ministry of Health, 2014

4 Governance Principles

Education and training of all

healthcare providers caring for
children with PC needs

Furthering of pediatric homecare

Reorganization of existing
pediatric facilities

Effective collaboration across

settings
“Cuidados Pediátricos Integrados”
Integrated Pediatric Care:
a holistic answer for the needs of children with life
limiting / threatening conditions and their families

Community
Primary Care
Hospital Care

Health
Education
Social Services

Child development
 2011

2013

2015
2018

level 2 (evidence of broad provision, with training available

and focused plans for development of services and
integration into healthcare services)
Take home messages
Palliative care is the
best kept secret in
health care.

Stephen R Connor
Worldwide Palliative Care Alliance
2013
Pediatric palliative care is not about dying,
rather it is about helping
children and their families
to live their live to their fullest
while facing complex medical conditions.

Himelstein, 2006
 Resources
Together for Short Lives
www.togetherforshortlives.org.uk
International Children’s Palliative Care Network
www.icpcn.org
Pediatric Taskforce / European Palliative Care Association
www.eapcnet.eu/Themes/Specificgroups/Childrenandyoungpeople.aspx
Grupo de Trabalho de Cuidados Continuados e Paliativos da Sociedade
Portuguesa de Pediatria
www.spp.pt/conteudos/default.asp?ID=349
Grupo de Apoio à Pediatria da Associação Portuguesa de Cuidados Paliativos
www.apcp.com.pt/associacao/grupo-pediatria-apcp.html
Cuidando juntos
www.cuidandojuntos.org.pt