05 PEDIA & ADOLESCENT CARE
LET IT GO OR LET IT SLOW
 Despite the same nomenclature, conditions with the
same name may differ in their implications for
children and adults.
 Parents have become increasingly responsible for the
delivery of treatment and thus a significant burden of
daily care has been taken up by families.
LIFE-LIMITING & LIFE-THREATENING ILLNESS
 Life-limiting illness is defined as a condition where
premature death is usual, but not necessarily
imminent.
 Life-threatening illness is one where there is a high
probability of premature death but there is also a
chance of long-term survival to adulthood.
GROUPS:
 Group 1 - Life-threatening conditions for which curative
treatment may be feasible, but can fail
o e.g. cancer, organ failure of heart, liver or kidney,
infections
 Group 2 - Conditions requiring long periods of intensive
treatment aimed at prolonging life, but where
premature death is still possible
o e.g. cystic fibrosis, HIV/AIDS, cardiovascular anomalies,
extreme prematurity
 Group 3 - Progressive conditions without curative
options, where treatment is palliative after diagnosis
o e.g. neuromuscular or neurodegenerative disorders,
progressive metabolic disorders, chromosomal
abnormalities, advanced metastatic cancer on first
presentation
 Group 4 - Irreversible, non-progressive conditions with
severe disability causing extreme vulnerability to
health complications
o e.g. severe cerebral palsy, genetic disorders, congenital
malformations, prematurity, brain or spinal cord injury
 Children are a moving target for whom levels of
function in various dimensions – and even the
dimensions themselves – change with age and
developmental stage”.
 A child with a chronic illness faces the same
developmental tasks and challenges as a healthy
child.
 may be a function of a number of variables, including
the child’s age at diagnosis, and social and family
relationships
 At any age, the greatest impact of the disease may
occur when the demands of the disease or
treatment prevent the attainment of life goals.
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 brain-dead child
 permanent vegetative state
 ‘no chance’ situation: The child has such severe disease
that life-sustaining treatment simply delays death
without significant alleviation of suffering.
- Treatment to sustain life is inappropriate
 ‘no purpose’ situation: Although the patient may be
able to survive with treatment, the degree of physical
or mental impairment will be so great that it is
unreasonable to expect them to bear it.
Age of “majority”
- threshold of adulthood as it is conceptualised in law
- chronological moment when children legally take
control over themselves, their actions and decisions,
thereby terminating the legal control and legal
responsibilities of their parents over them
Age of “license”
- is the age at which the law permits an individual to
perform specific acts and exercise certain rights, with
or without any restrictions:
o allowed to vote
o leave school without a diploma
o enter into legally binding contracts
o operate a motor vehicle
o purchase and consume alcoholic beverages, and so on
 younger children offer less complex explanations and
rely less on internal bodily cues to indicate the
presence of illness
 with age, children offer a more organised description of
process and cause
 understanding their condition does not generalize to
understanding their illness
 Art. 12: the right to be heard
 Art. 12 & 14: the right to express his own rights and the
right for autonomy
 Art. 3: the best interest of the child
 Art. 23: the right to be protected from violence
 Art. 2: the right not to be discriminated against
1. Recognize that disclosure is a process, not a binary
either/or
2. Establish a culture of openness from the start
3. Partner with parents to preserve hope for
miracles, and brainstorm solutions
4. Inform parents that you will not directly contradict
their wishes but that you also will not lie to the
child
5. Discuss with parents the known benefits of
allowing children access to honest information
05 PEDIA & ADOLESCENT CARE
from trusted sources and the known harms that
can occur when children are “protected”
6. Engage in a dialogue about the “process” of
evolving disclosure to negotiate an approach that
is family-centered but also respects the care
team’s primary duty to the child-patient
7. Explore and address family fears about clear
dissemination of information
8. Involve interdisciplinary team members and
trusted family advisors in the conversations
9. Explore what the child already knows and would
prefer to know, in front of the parents and
separately, if allowed
10. Employ nonverbal means to elicit comprehension
and questions from children whose
communication is not primarily verbal.
PILLOW ANGEL
DEMING
 97% of what’s important in most organizations isn’t
measured.
 There is a vague, unformed sense that we are being
ruined by our best efforts, which being directed at the
wrong things (i.e. the 3% measurables) or even at the
right things in the wrong way, means that we seem to
end up in a worse position than the one in which we
started
1. Symptom control
2. Attainment of their full potential of growth and
development
3. Open and clear Communication appropriate to the
developmental stage of the child is necessary
4. Continual emotional support to help the child
cope with emotive issues
5. Recreational opportunities, tools, techniques
6. Access to appropriate spiritual care and support
respecting the family’s cultural and religious
background
7. Thorough knowledge of their child’s condition and
how best to care for him/her
8. Financial help: changes in lifestyle can affect
employment status / financial security of the family
16 year old female
 hypogastric pain
 menarche: 10 years old
 consult with her mother
 issues?
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16 year old female
 sexually active
 possibility of an STD
 mother asks you the clinical impression
Confidentiality
 Breaking adolescent confidentiality is something
that a physician should take very seriously.
 Therapeutic alliance with adolescents is particularly
fragile, and the resulting mistrust will not be easily
repaired.
Breaking Confidentiality
 ethical obligation to protect and act in the best
interest of adolescents, who have limited life
experiences to help them make judgments
 a legal obligation to report, as with child abuse the
child is a danger to him- or herself
there is a danger to others
8 year old male
 adenocystic malformation turning 19 in a few weeks
transfer of care
Transitioning to Adulthood
 >90% of children with chronic illness now reach
adulthood
 Major potential impact on achievement of
developmental milestones
 Puberty heralds increases in the prevalence of
mental health problems and substance misuse
What is transitioning?
 “A purposeful, planned process that addresses the
medical, psychosocial and educational needs of
adolescents...with chronic physical and medical
conditions as they move from child-centred to
adult-oriented health care systems.”
Core principles for transitioning:
1. Transition is not synonymous with transfer – it
must begin early and be planned carefully
2. Successful transfer as the culmination of a period
of planned transition care
3. A transition programme should allow flexibility in
relation to the specialty, hospital or team
4. Each hospital should have a transition policy setting
down the principles of transition from paediatric to
adult healthcare
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5. Ages at final transfer will vary, but it normally
should take place in the late teens
6. The transition process should extend beyond the
day of discharge/transfer from paediatric services,
with ongoing care received in the adult sector
being of equivalent quality and intensity
7. Adult healthcare professional involvement may
improve patient satisfaction, clinic attendance
and/or health outcomes
8. The transition process should address specific
health problems and how they affect the young
person’s social, psychological, educational and
employment needs and opportunities
9. Young people must be involved in developing their
transition programme to enhance their sense of
control and independence
 Forget the idea of prognosis entirely
 Involve PPC to enhance resource management for
the complex needs of family, treatment team and
community
 building relationships
 personalising interactions
 understanding young people’s lifestyles and
attitudes
 understanding young people’s fears about health
care and treatment using interactive and
consultative skills
 reaching young people via new technology

 Discuss the matter during childhood and as the

young person grows up
 Acknowledge issues facing both the patient and
his/her parents
 Identify colleagues who have an interest in young
adults
 Select a health worker (family practitioner, nurse,
etc.) who may supervise the transfer
 Organise common meetings with the new team

 Treat me like a person

 Try to understand
 Don’t treat me differently
 Give me some encouragement

 Think about appropriate points at which PPC might

be logically introduced:
o family is overwhelmed at diagnosis
o Phase I enrollment
o time of relapse or recurrence
o development of serious complications
o ICU admission or transfer

 Treat PPC as an adjunct medical specialty that

comes as part of the package with a chronic illness
diagnosis, rather than as an optional service.
 Families should be informed that they will be
receiving a palliative care consult rather than asked
if they want one, as this shifts the burden from the
family to the caregivers.
 Think up front about list of diagnoses for which
there is honest acknowledgment of the likelihood of
cure with no burdensome treatment.
 The many medical circumstances outside that small
group are candidates for considering PPC