PALLIATIVE CARE FOR

CHILDREN
Mary Ann Muckaden
MEDICAL LEAD, Sukoon Nilaya, for Non Cancer Palliative
care , KGVM,
CONSULTANT , Children’s Palliative care project, Cipla &
Shanthi Avedna Sadan Hospice

FORMER PROFESSOR & HEAD, Dept. of Palliative Medicine,

Tata Memorial Centre
PAST PRESIDENT , Indian Association of Palliative Care
PAST CHAIR, International Children’s Palliative Care Network
 Osteogenesis Imperfecta

 Types and life expectancy

 Medical Management

 Other management
  ?
 ?
 Loved  ?
 Understood  ?
 Be in control
 Trusted
FEEL
 Socially isolated
 Restricted with activities
 Depression, anxiety, sadness, withdrawal,
rebelliousness, or a decreased interest in school.
 Withdrawn, not doing well in studies
 Pain ( Total)

WANT
 Be as healthy as my peers; be treated as such
 Do what they do – play, school, diversion

AMERICAN ACADEMY OF PEDIATRICS


 Conditions where curative Rx feasible, can fail
Eg cancer, organ failure- heart, kidney
 Conditions where premature death is inevitable- long
periods of Rx with normal activity eg cystic fibrosis
 Progressive conditions –exclusively palliative treatment
eg Muscular dystrophy
 Irreversible, but non progressive conditions eg cerebral
palsy, spinal cord injuries

International Children’s Palliative Care Network

Palliative Care for Children Oxford University Press 2006
HIV/AIDS Prevalence 2,02,000 in India
( UNAIDS, India 2005)
Cancer 80,000 new cancer cases
Thalassemia 75,000 new per year
Sickle cell etc.
Respiratory
Cardiac
Neurological
Neo natal
Others
 TRANSITIONS IN LIFE-LIMITING ILLNESS

1. Best 2. Decision 4. Futility 6. Palliative

interest making Sedation

Disease Decompensation Dependency and Decline Death and

Early
containment symptoms increase terminal stage bereavement
Experiencing life
Maintaining limiting illness
function

Transitions Transitions Transitions Transitions Transitions

3. Conflict 5.Resuscitation

Beauchamp TL, Childress JF. Principles of Biomedical Ethics, 6th ed, Oxford University Press, 2009.
p.336.
PHYSICAL SOCIAL
➢ Pain ➢ Social
➢ Wound isolation
➢ Financially
challenged
➢ No mother
to care for
family
PSYCHOLOGICAL
➢ Mother had died of brain
tumour SPIRITUAL
➢ Told him to take care of his ➢ Why me?
younger sister
➢ Difficult to understand his pain
❑ Pain
❑ Nausea and Vomiting
❑ Fatigue
❑ Dyspnoea

Palliative Care for Children Oxford University Press

2006
 High levels of anxiety as imagination is very strong
 May not be able to discuss with parents, often relate
better to peers
 Suffer acutely from feelings of guilt, abandonment and
fear of mutilation
 Concepts of death differ with age- after 8 years, the
concept of death is permanent

Children’s Palliative Care Clinic- Tata Memorial Centre

 SOCIAL SPIRITUAL

➢ Is it contagious ➢ Why me/What did I do wrong

➢ Will my other children have to deserve this
it ➢ I have always done good in
➢ How will I afford the Rx my life
➢ Stay in strange city for Rx ➢ Is it something from my
➢ Other children left alone previous life

Children’s Palliative Care Clinic- Tata Memorial Centre

  A child's and family's spirituality and religious life will interact with
that of the Health Care Providers.
 They may or may not identify with a particular spiritual and/or
religious tradition, and may therefore exhibit different degrees of
receptivity to spiritual dimensions of care.
 Their attitudes will shape how the Health Care providers experience
the spirituality and/or religiosity of the child and the family.
 They have to be familiar with families' culturally-based orientations
know how these relate to families' broader worldviews *

Ref:* Linda L. Barnes et al :Spirituality, Religion, and Pediatrics: Intersecting Worlds

of Healing,2000
 Cope with terminal
illness
 Cope with imminent
death
 Cope with socail
stigma
 Cope with ill child
 Prepare family for
imminent death
 Discuss fears
Jefidoff A. and Gastner R
Helping parents of the dying child- An Israeli experience-
J Ped Nurs1993;8:413-5
 Understand changes
in family dynamics
 Understand what
would happen in
terminal stage
 Describe feelings
regarding funeral
 Discuss what home
will be like after child
dies
 The UN Convention on the Rights of the Child (recognized
in the UK in 1991) established that children have the right
to:
 to be protected from harm
 to take an active part in the society
 to express their views and have them taken into
consideration
 to services which meet their needs.

World Medical Association has codified these rights

Both endorse the development of a right based, child centred

health care system

United Nations Convention on the Rights of the Child (1989) . The Stationery
Office, London
Dworkin,R. Taking Rights seriously. Oxford: Oxford University Press, 1981
 Palliative care for children
and young people with life-
limiting conditions is an
active and total approach
to care, embracing
physical, emotional, social
and spiritual elements. 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
death and bereavement.
 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;
 Offers a support system to help the family cope
during the patients illness and in their own
bereavement;
 Uses a team approach to address the needs of
patients and their families, including
bereavement counseling, 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.
 Tasks in pediatric palliative care.

Current Problems in Pediatric and Adolescent Health Care,

Jeffrey C. Klick, Julie Hauer Volume 40, Issue 6, 2010, 120–151
 Pediatric palliative care and Pediatric hospice care (PPC-PHC) are
essential aspects of medical care for patients with life-threatening
conditions or need end-of-life care.
 PPC-PHC aims to relieve suffering, improve quality of life
 Care is high quality, readily accessible, and equitable; across the age
spectrum and life span, integrated into the continuum of care;
 Efforts at research and quality improvement .
 Facilitate informed decision-making, and assist in care coordination
between clinicians and across sites of care.
 Care is patient centered and family engaged; respecting and
partnering with patients and families.
 Ensures that all clinicians can provide basic palliative care and
consult PPC-PHC specialists in a timely manner.
 Ensuring that all large health care organizations serving children with
life-threatening conditions have dedicated interdisciplinary PPC-PHC
teams, which should develop collaborative relationships between
hospital- and community-based teams; that PPC-PHC be provided
as integrated multimodal care

 Pediatrics November 2013, VOLUME 132 / ISSUE 5

From the American Academy of Pediatrics Policy Statement
➢ Early integration of PPC enhances the provision of holistic
care, addressing psychological, social, spiritual, and physical
concerns, without precluding treatment with the goal of cure.
➢ Although current PPC models focus primarily on the hospital
setting, community-based PPC (CBPPC) programs are
increasingly integral to the coordination, continuity, and
provision of quality care.
➢ Optimal referral models to enhance early involvement, and
fundamental tenets of CBPPC.
➢ CBPPC in promoting family-centered care.
➢ This model strives to enhance shared decision making,
facilitate seamless handoffs of care, maintain desired locations
of care, and ease the end of life for children who die at home.
➢ The effect of legislation on state-specific CBPPC programs is
reviewed.
➢ Strategies and resources for designing, implementing, and
maintaining quality standards in CBPPC programs are
reviewed.
Pediatric palliative care in the community Kaye EC Rubenstein J, Levine D, Baker
JN, Dabbs D, Friebert SE CA Cancer J Clin. 2015 Jul-Aug;65(4):316-33
A team is defined as
“a group of individuals with a common purpose of
working together.” The patient and his/her family is the
central member of the team.
 EFFECTIVENESS - how the individuals in
a team link with each other, supplement
each other, support each other, and
maintain the moral of the team.
 Communication- how they communicate
with each other.
 TRAINING- Should be appropriate to the
level of the team
 HARMONY IN WORKING TOGETHER-
for all Maddocks, I. (2006). Communication – an essential tool for team hygiene.
In: Speck, P. (ed.) Teamwork in Palliative Care. Fulfilling or Frustrating?
Oxford University Press. United Kingdom.
 PPC - Doctor, Nurse, Psychologist, Social
Worker
 Shared care with Oncologist, Onco.Nurse
, Nutritionist, Occupational Therapy,
Physio. , Paediatrician, HIV personnel
 Trained Volunteers
 Home Care teams
 Health workers at place of residence
 Family as core member of team
1. Evaluation
2. Explanation
3. Individualize treatment
4. Supervision
5. Attention to detail

(to ass u me is to make an ass of you & me)

SYMPTOM MANAGEMENT- 2nd edition Robert
Twycross
SYMPTOM MANAGEMENT

Correct the correctable

Non-drug treatment

Symptomatic drug treatment

 Use of cancer modifying Rx
 Care of mouth, back, eyes, skin
 Treat infections appropriately
 Correct anaemia
 Lymphoedema care
 Toxicity/c
ost Symptom
relief
+/or time
added

JUDICIOUS USE OF RADIATION,

CHEMOTHERAPY AND SURGERY
 Initial evaluation of pathology and stage of
disease.
 Local control –even in presence of mets.
( amputation and reconstruction with own
part/articificial).
 Control of offensive disease- debridement
 Control of pain by palliative removal.
 Reconstruction and rehabilitation.
 Minor surgeries for Stomas etc.
 Tumour shrinkage
 Bony metastasis
 Pathological Fracture

DOSE/ TIME/ FRACTIONATION

short time/high dose per #

 Single 10Gy/ Single # ( bed ridden, poor GC)

 Multiple 20 Gy/5#,
30Gy/10#
40 Gy/20 upto radical dose
 Systemic chemotherapy is the main treatment
available for disseminated malignant diseases.
 Act on a specific phase of cell cycle.
 Usually combinations which act on different phases
thus improving efficacy and reducing toxicity.
 Chemotherapy usually require multiple cycles to
achieve optimum results.
 For Palliation generally oral chemotherapy cycles are
used
 Assess every 3 cycles for symptom/toxicity
assessment
 Causes
◦ multiple potential causes
◦ thorough assessment crucial

◦ brain –raised ICT

◦ GI tract – int obst., hepatic dys., constipation
◦ Renal and metabolic
◦ Pain
◦ Psychological
 Correct the correctable
 Centrally induced- haloperidol
 CTZ- Metoclopramide, Domperidone ( increase
gastric emptying)
 Gut- Ondansetron, Granisetron
• Second line-
➢ Trimeprazine, Cyclizine ( NA in India)
➢ Olanzepine
➢ Low dose steroids
 Accompanied by general fatigue
 Specific etiology not well understood-
➢ Host factors IL-6, TNF, anaemia, less muscle
mass, cardiac toxicity of Rx
➢ Tumour factors – para neoplastic syndromes,
direct infiltration
 Distresses child who cannot be like peers &
caregivers
 General
◦ assess / manage comorbid conditions
◦ assess patient’s comfort with condition
◦ alter diet in favor of appetizing food
◦ Educate patient / family
 Specific
◦ Correct anaemia, depression
◦ Megestrol acetate
◦ Cortico steroids long acting better, short lived action,
side effects to be balanced.
◦ Role of thalidomide not advocated in children
 Most frequent distressing symptom in advanced
illness
 Educate child and family
Management
 Correct anaemia, fluid imbalance,
depression, pain
 Low dose steroids, megestrol acetate,
psychostimulants eg methyl phenydate
 Modify life style
 Modify diet
 Give child ability to express
 A symptom, not a sign
 Measures do not correlate with perception of
breathlessness
 Many causes, interrelated
 Correct the correctable- anaemia, pleural or
ascitic fluid
 Modify behaviour
 Low dose steroids, broncodilators trial -systemic
or nebulised
 Oxygen- Controversial- useful only with
desaturation
◦ placebo to nonhypoxemic
◦ May be difficult to arrange at home
 Nonpharmacologic interventions
◦ open window
◦ limit number of people in room
◦ Relaxation techniques
◦ Diversion therapy

 Family / caregiver
◦ Support and educate family / caregiver
 Opioids
➢ OPIOID NAÏVE Start With 0.1 mg/kg Xq4h,
➢ On opioids give 50% increase in existing dose
➢ Titrate daily
 Benzodiazepines when not controlled, for panic
➢ Midozalam ( short acting)- spray or sub-lingual
➢ Lorazepam, diazepam & clonazepam- use with
care
• Oxygen controversial
◦ Question (history)
➢ Site using the body chart
➢ Quality of pain(may indicate type of pain)
➢ Impact or Interference with daily living and it's effect on QOL
➢ Effect on psychological state of child and family
➢ Relieving or excarcebating factors and QOL
o Use Pain tool for appropriate situation
Complete Physical exam. Esp. neurological exam.
Relevant Imaging techniques - Plain X-Rays, CT, MRI
◦ Evaluate --- behaviour and Physiological changes
◦ Sensitise family --- use knowledge and help
◦ Take into account cause of pain
◦ Take action action

Ref-Baker and Wong, Orthopaedic Nursing Jan/ Feb 1999

 General guidelines
DRUG NON-DRUG
By the appropriate route Supportive- Counselling for
whole family
By the clock Behavioural-
Breathing, Relaxation
By the ladder Physical-TENS, Touch,
exercises
(By the Child) Occupational therapy-
splints, braces, splints
Cognitive-Imagery, Hypnosis

▪ Believe that the pain is as severe as the child says it is.

 Reassess at regular intervals.
 Individualise each child's pain and your approach.
 CONCEPT OF TOTAL PAIN- Always assess and manage
psycho-social impact.
 Non‐opioid
➢ Paracetamol 10‐15 mg/kg 4‐6hrly
➢ Ibuprofen 5 -10mg/kg 6‐8hrly (max 30mg/kg/day)

 Strong opioid Morphine

➢ PO: 0.2 mg/kg 4hrly
➢ IVI bolus: 0.1 mg/kg
➢ IVI infusion: 0.003 – 0.05 mg/kg/h

 Step 2 ‐ Opioid +/‐ Non‐opioid +

▪ Available as patches ‐takes up to 24‐48 hours to
peak,the dosage is based on the oral morphine
dose equivalent per 24‐hour total
▪ The smallest fentanyl patch available for use in
children is 12.5microgm which corresponds to a total
daily dose of 45mg of oral morphine.
▪ Patches take 12 hours to reach effective blood levels
so other analgesia such as 4 hourly oral morphine
should be continued for the first 12 hours.
 Encourage child to be normal- school, play
with peers, games at home
 Small tasty unconventional meals
 Diversional therapy- any form CBT etc
 Counsel the child and family
 Be the advocate
 Gain confidence  Continuous Support for
 Discuss openly, sibling /parent in non
children to not threatening environment.
understand  Studies show that they were
euphemisms happier when they could
 Concentration is for the discuss any issues
moment  This includes death with
 Diversion therapy eg their child
drawings and story  Respite care when needed
telling to communicate  Bereavement Care is
prolonged as compared to
adults.
 Picnics
 Outings
 Support groups- Cankids, Anupam Kher
foundation
 Implicit or explicit belief system

 Influences understanding of and coping with

illness

 Understanding the larger meaning in life

 Early referrals to palliative care ensures that the family
is familiar with the PPC team when the focus of care
shifts from curative to palliative.
 The PPC team is often involved in shared care for the
child along with oncologists, radiation oncologists and
other therapists.
 Outpatient consultations, liaison with local physicians,
homecare visits and hospice referrals ensure continuity
of care.
 Doctors are available on the phone.
 Nurses are regularly in touch with the pediatric patients
on the phone.
 WHEN IN PALLIATIVE CARE
Active disease Minimal disease No disease modifying
modifying treatment modifying treatment treatment
100%

Palliative Care

Bereaveme
nt
Clinical Effort

Curative Care
0%

Dx Disease Course Death

 "Health-related quality of life" (HRQL) is an
individual's satisfaction or happiness with
domains of life insofar as they affect or are
affected by "health“
 HRQoL is therefore thought of as a person’s
subjection perception of the impact of ill health
on daily life and includes physical, psychological
and social functioning.

Calman KC. Quality of life in cancer patients–an

hypothesis. J Med Ethics. 1984 Sep;10(3):124–127
Autonomy - patient has the right to choose or refuse the
treatment
Beneficence - a doctor should act in the best interest of the
patient
Non-maleficence - first, do no harm
Justice - it concerns the distribution of health resources
equitably.
Added to the above four, are two more aspects which form the
cornerstones of medical practice:
Dignity - the patient and the persons treating the patient have
the right to dignity
Truthfulness and honesty - the concept of informed consent
and truth telling
https://www.researchgate.net/publication/45406955_Ethics_in_Palliative_Care
 Children would love to be cared for in the
midst of their family
 Extended family, neighbours
 Friends
 School
 Vibrant home care service makes all this
possible
HOSPICE CARE
Pediatric Blood & Cancer
Volume 57, Issue 3, pages 361-368, 17 MAR 2011 DOI:
10.1002/pbc.23100
http://onlinelibrary.wiley.com/doi/10.1002/pbc.23100/full#fig2
 Terminal care is an important part of
palliative care , and usually refers to the
management of patients during the last few
days, weeks or months of life, from a point
when it becomes clear that the patient is in a
progressive state of decline.
 NATIONAL COUNCIL FOR HOSPICE AND
SPECIALIST CARE SERVICES
LONDON 1995
 14 year old female osteosarcoma of Rt
ulna with severe bleed
 Child being cared for by Home Care
team
 Multiple Lung mets causing
breathlessness at rest
❑ Anaemic, hypo-albuminemia causing
moderate lympho-edema B/L lower
limbs
❑ Child is at End of life
❑ List symptoms and management
 Confusion/Disorientation/Delirium
 Weakness/Fatigue/Decreased Oral Intake
 Decreased Blood Perfusion/Renal Failure
 Vital Sign Changes- shallow breathing, elev temp,
incr heart rate
 Incontinence/Urinary Retention

INCTR DATA
 Fear, depression & Anxiety,
 Helpless, hopeless- both child and family
 Worthless- child

 Financial difficulties, social stigma, family

dynamics

 Why me- at threshold of life

Parents- how can this be?
 Shared decision making- Family, professionals,
child
 Holistic problem solving approach
 Avoid unnecessary interventions
 Review regularly
 Place of Care
 Consider the whole family- child, parents,
siblings
 Use a Team approach
 Maintain constant communication
 Follow ethical principles-
 Round the clock medication
 Rationalise regular medications( omit what
is not required)
 Anticipate route of drug administration
(Sub-cutaneous, rectal, port etc.
 Ensuring availability of medical/nursing
staff & required medications, even at
home
 Keep emergency kit available
 Careful Positioning
 Pressure area care
 Mouth care
 Bowel and bladder care
 Eye care
 Honest and complete information
 Ready access to staff
 Communication and care coordination,
 Emotional expression and support by staff,
 Preservation of the integrity of the parent-child
relationship,
 Advance directives
 Faith religious beliefs.

Improving the Quality of End-of-Life Care in the Pediatric Intensive Care Unit: Parents’
Priorities and Recommendations Elaine C. Meyer et al PEDIATRICS Volume 117, Number 3,
March 2006
1) support of the family unit,
2) communication with the child and family
about treatment goals and plans,
3) ethics and shared decision making,
4) relief of pain and other symptoms,
5) continuity of care,
6) grief and bereavement support
Toward interventions to improve end-of-life care in the pediatric intensive
care unit Troug R. et al Crit Care Med 2006 Vol. 34, No. 11 (Suppl.)

71
 Honesty & Being there
 Correct fears
 Appropriate explanation to Patient
and family ( may require direct
questions)
 Discussion of advance directives
 Cultural and religious observances
 Caring for a dying patient is very stressful
 All team members need to work together and
support each other
 Medications should be kept ready and staff
should have the confidence
 May be called upon to perform numerous roles
and should be prepared through adequate
training
 Very often the advice of a senior member may
be sought regarding difficult decisions eg
removal of ventilator
 At a HOSPITAL always in a quiet
ward where the family members are
allowed to be present
 At HOME surrounded by the loved
ones ( needs effective set-up)
 At a HOSPICE- Patients should be
admitted in advance
 Families should be prepared in advance-
appropriate counselling and communication
 Choose place of care
 Appropriate environment
 Be there ( Nurse, LGP)
 Psychological support for child & family
 Respect and facilitate Religious observances
 Bereavement support
Very common scenario especially in Paediatric cancers
as they are sensitive to treatment
 Concept of Medical futility- Benefit and toxicity
discussions with sensitive communication
 In Best interest of child- (Other Professionals called in
can prove invaluable in easing of tension between child,
parents, and pediatrician)
 In rare cases, recourse to Hospital Ethics committees,
courts
 Advanced care planning- recent Supreme Court
judgement - 2018

27/01/2024 76
 Respect for patient autonomy
 Beneficence (do good )
 Non-maleficence (minimise harm)
 Justice ( fair use of available resources)

Added to the above four, are two more aspects which

form the cornerstones of medical practice:
❑ Dignity - the patient and the persons treating the
patient have the right to dignity
❑ Truthfulness and honesty - the concept of informed
consent and truth telling
https://www.researchgate.net/publication/45406955_Ethics_in_Palliative_Care

77
 Withholding and withdrawing life-sustaining treatment
in children. A framework for practice (2nd edition 2004
 Royal College of Paediatrics and Child Health . BMA
(3rd edition 2007)
 Withholding and withdrawing life-prolonging medical
treatment: guidance for decision making. See Part 7:
 Decision making by young people with capacity (pp
83-95)
 Part 8: Decision making for children and young people
who lack capacity (pp 96-108).
NHS Toolkit for high quality neonatal services (2009).
 Grief is a normal process and most families do not
need specialist help.
 Ideally the professionals who have been working
with the family should be prepared to continue their
support in bereavement and for this they need
appropriate training.
 Befriending volunteers, who have been carefully
selected and received appropriate training, may be
helpful.
 There is a need for named keyworkers and other
staff involved in children’s palliative care to be
trained in the assessment of the bereaved so that
they are able to identify those who may need special
help.
 Access to bereavement counselling should be
available as part of the health service provision for
those few bereaved families who require it.
 MUST BE DONE - Needs adequate
training
 All team members should be able to work
together (may need to take on each
other’s role)
 We need to give family the choice of
where to die
 Needs a lot of advance care planning &
directives
 Family and staff should be supported
THANK YOU