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8th Malaysian Hospice Congress 13-15th June 2008 Bayview Hotel, Georgetown.
Palliative Care: A Paediatrician's Perspective
KHAW POH GUAN
Focus !
Understanding of Paediatric Palliative Care.
!
How is palliative care different in paediatrics?
!
Transition to adult palliative care.
!
Best Practices in paediatric palliative care.
!
Place of care
MD (UKM) MRCPCH (UK)
Penang Adventist Hospital
Paediatric Palliative Care Definition: ! embracing physical, emotional, social and spiritual elements. ! enhancement of quality of life. ! support for the family, ! includes the management of distressing symptoms, provision of respite, and care through death and bereavement.’ Association for Children with Life Threatening or Terminal Conditions and their Families and the Royal College of Paediatrics and Child Health. ‘ A Guide to the Development of Children’s Palliative Care Services’ London 1997.
! !
Sometimes, cure is not possible. They suffer significantly from −
inadequate recognition and treatment of symptoms
−
aggressive attempts at cure,
−
fear and sadness.
Wolfe J, Grier HE, Levin SB, et al. Symptoms and suffering at the end of life in children with cancer. NEJM 2000; 342: 326-333.
The Family...... !
Profound trauma experience
!
Increased potential for complicated grief reactions and impaired long-term adjustment.
Rando TA. An investigation of grief and adaptation in parents whose children have died from cancer. J Pediatr Psychol 1983; 8: 3-19.
1
Direct & Indirect Benefit !
The child & the family.
!
Long term implications for
The History !
!
−
family functioning,
−
mental health,
−
education and
−
employment.
Palliative Care is less well developed in paediatric
Palliative Care has been recognised as a medical specialty since 1987. Only recently however have the palliative care needs of children and their families been thought about in a structured way.
How is palliative care different in children ?
!
The number
!
Different spectrum of illness
!
The range of disorders
!
Smaller, more varied patient population
!
The duration
!
Parents are generally more involved.
!
Developmental factors.
!
!
Developmental, ethical and physiological aspects The involvement of parents.
How is palliative care different in children ?
Transition to palliative care ? !
!
Different physiology and pharmacokinetics
!
Close relationship
!
Sibling and extended family needs
!
Grief in parents
!
!
Diagnostic diversity and prognostic uncertainty. Difficult to identify a point at which treatment becomes exclusively palliative. A MIXED MODEL.
2
The Transition to Palliative !
A Process, not an event
It may be difficult for families to abruptly change their focus from cure to palliation.
!
! !
Preparation is required.
!
Maintaining hope and addressing reality.
The misunderstanding
!
Decision-making regarding the goals of care. Parents often need time to absorb information, ask questions and consider the child’s best interests. Where & the extent ?
The focus at different stages
!
Difficulty in accepting this at an emotional level.
!
Surviving to a special occasion
!
“giving up” ?
!
being able to go on a last holiday
!
“doing nothing” ?
!
where they wish
Refer early......
Best Practice in paediatric palliative care
!
Shared expertise
!
Assessment and frequent evaluation.
!
Need time to create rapport.
!
Key worker as coordinator of care
!
Involvement expert in the child’s condition
!
Involvement of local clinicians and nurses
3
Best Practice in paediatric palliative care
Best Practice in paediatric palliative care
!
24 hour support
!
Provision of medications and aids
!
Regular respite
!
Provision of housing adaptations and equipment
Emotional support of parents and siblings extending into bereavement
!
Financial assistance
!
Places of care Hospice !
RUMAH HOSPIS PULAU PINANG
!
Respite care.
!
A homely environment
!
!
Many families take the opportunity to rest and attend to the needs of their other children. Maintain the strength and skills
Places of care Hospital !
Difficulties for staff and families
!
Emergency admission : slow and frustrating!
!
A letter and a care plan
!
Privacy and accommodate friends and relatives
!
!
Hospital is the choice if : − Parents feel unable to deliver the care required at home, − or are anxious about symptom control − and terminal events. Supporting parents and encouraging their involvement, can increase their confidence in going home.
4
Places of care Home !
!
!
Most families (up to 80%) wish to care for their child at home. With appropriate planning, expertise and support most symptoms can be effectively managed at home.
!
Obvious benefits : −
Familiar environment
−
Freedom
−
Attend to the needs of siblings and involve them in the care of the sick child
−
Privacy
The Hospice-at-home Programme.
Encouragement !
!
Flexible
Positive experience.
!
Caring for a child at home is an enormous task and many difficulties.
!
!
Exhaustion
!
Difficulty reconciling their dual roles
!
Financial burden
“Palliative care starts when curative treatment stops”
Anxiety over symptom control and terminal events. This should not be seen as a failure .
“Palliative care starts when curative treatment stops”: Elements of palliative care and curative treatment can be combined.
5
Palliative Care: A Paediatrician's Perspective
KHAW POH GUAN
Focus !
Understanding of Paediatric Palliative Care.
!
How is palliative care different in paediatrics?
!
Transition to adult palliative care.
!
Best Practices in paediatric palliative care.
!
Place of care
MD (UKM) MRCPCH (UK)
Penang Adventist Hospital
Paediatric Palliative Care Definition: ! embracing physical, emotional, social and spiritual elements. ! enhancement of quality of life. ! support for the family, ! includes the management of distressing symptoms, provision of respite, and care through death and bereavement.’ Association for Children with Life Threatening or Terminal Conditions and their Families and the Royal College of Paediatrics and Child Health. ‘ A Guide to the Development of Children’s Palliative Care Services’ London 1997.
! !
Sometimes, cure is not possible. They suffer significantly from −
inadequate recognition and treatment of symptoms
−
aggressive attempts at cure,
−
fear and sadness.
Wolfe J, Grier HE, Levin SB, et al. Symptoms and suffering at the end of life in children with cancer. NEJM 2000; 342: 326-333.
The Family...... !
Profound trauma experience
!
Increased potential for complicated grief reactions and impaired long-term adjustment.
Rando TA. An investigation of grief and adaptation in parents whose children have died from cancer. J Pediatr Psychol 1983; 8: 3-19.
1
Direct & Indirect Benefit !
The child & the family.
!
Long term implications for
The History !
!
−
family functioning,
−
mental health,
−
education and
−
employment.
Palliative Care is less well developed in paediatric
Palliative Care has been recognised as a medical specialty since 1987. Only recently however have the palliative care needs of children and their families been thought about in a structured way.
How is palliative care different in children ?
!
The number
!
Different spectrum of illness
!
The range of disorders
!
Smaller, more varied patient population
!
The duration
!
Parents are generally more involved.
!
Developmental factors.
!
!
Developmental, ethical and physiological aspects The involvement of parents.
How is palliative care different in children ?
Transition to palliative care ? !
!
Different physiology and pharmacokinetics
!
Close relationship
!
Sibling and extended family needs
!
Grief in parents
!
!
Diagnostic diversity and prognostic uncertainty. Difficult to identify a point at which treatment becomes exclusively palliative. A MIXED MODEL.
2
The Transition to Palliative !
A Process, not an event
It may be difficult for families to abruptly change their focus from cure to palliation.
!
! !
Preparation is required.
!
Maintaining hope and addressing reality.
The misunderstanding
!
Decision-making regarding the goals of care. Parents often need time to absorb information, ask questions and consider the child’s best interests. Where & the extent ?
The focus at different stages
!
Difficulty in accepting this at an emotional level.
!
Surviving to a special occasion
!
“giving up” ?
!
being able to go on a last holiday
!
“doing nothing” ?
!
where they wish
Refer early......
Best Practice in paediatric palliative care
!
Shared expertise
!
Assessment and frequent evaluation.
!
Need time to create rapport.
!
Key worker as coordinator of care
!
Involvement expert in the child’s condition
!
Involvement of local clinicians and nurses
3
Best Practice in paediatric palliative care
Best Practice in paediatric palliative care
!
24 hour support
!
Provision of medications and aids
!
Regular respite
!
Provision of housing adaptations and equipment
Emotional support of parents and siblings extending into bereavement
!
Financial assistance
!
Places of care Hospice !
RUMAH HOSPIS PULAU PINANG
!
Respite care.
!
A homely environment
!
!
Many families take the opportunity to rest and attend to the needs of their other children. Maintain the strength and skills
Places of care Hospital !
Difficulties for staff and families
!
Emergency admission : slow and frustrating!
!
A letter and a care plan
!
Privacy and accommodate friends and relatives
!
!
Hospital is the choice if : − Parents feel unable to deliver the care required at home, − or are anxious about symptom control − and terminal events. Supporting parents and encouraging their involvement, can increase their confidence in going home.
4
Places of care Home !
!
!
Most families (up to 80%) wish to care for their child at home. With appropriate planning, expertise and support most symptoms can be effectively managed at home.
!
Obvious benefits : −
Familiar environment
−
Freedom
−
Attend to the needs of siblings and involve them in the care of the sick child
−
Privacy
The Hospice-at-home Programme.
Encouragement !
!
Flexible
Positive experience.
!
Caring for a child at home is an enormous task and many difficulties.
!
!
Exhaustion
!
Difficulty reconciling their dual roles
!
Financial burden
“Palliative care starts when curative treatment stops”
Anxiety over symptom control and terminal events. This should not be seen as a failure .
“Palliative care starts when curative treatment stops”: Elements of palliative care and curative treatment can be combined.
5
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