lr intro to cpc1).pdfaugust&2012&...

August 2012

ICPCN e-learning course – Introduction to Children’s Palliative Care

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INTRODUCTION TO PALLIATIVE CARE IN CHILDREN

Introduction to Children’s Palliative care Introduction • All children need care, attention, security, love, nurturing, play, acceptance, • They need reassurance that they will be looked after and loved. • When children lose someone they love or are themselves dying, they need simple and age

appropriate information …..they need care ……… What is palliative care for children? The World Health Organization (WHO) defines it as: • The active total care of the child’s body, mind and spirit, and also involves giving support to

the family (WHO 2002). • It begins when illness is diagnosed, and continues regardless of whether or not a child

receives treatment directed at the disease. • Health providers must evaluate and alleviate a child's physical, psychological, and social

distress. • 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.

• It can be provided in tertiary care facilities, in community health centres and even in children's homes.

Why do we need palliative care for children? Why is palliative care for children important? Palliative care for children is important because we estimate that there are between 7 and 9 million children in the world who would benefit from palliative care, and because the needs of children are different to those of the needs of adults, and we are looking at children from the neonatal period up unto the age of 18-‐21 and we have to look at their developmental needs as well as everything else. Which children need palliative care? A wide variety of children with life-‐threatening and life-‐limiting conditions will require palliative care. Work is currently underway to identify the key conditions requiring palliative care in children in different countries. However Together for Short Lives (formerly ACT) in the UK have defined four broad categories of life-‐threatening and life-‐limiting conditions, which can be adapted and adopted to different settings and countries. Putting these conditions into groups is not easy and the examples used are not exclusive. Diagnosis is only part of the process, other issues that need to be taken into account include: • the spectrum of disease, • the severity of disease • subsequent complications, • the impact on the child and family. Category 1 Life-‐threatening conditions for which curative treatment may be feasible but can fail.

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For example: • cancer • irreversible organ failures of heart, liver, kidney Category 2 Conditions where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities.

For example: • Cystic fibrosis • Duchenne muscular dystrophy • HIV/AIDS Category 3 Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years.

For example: • Batten disease • Mucopolysaccharidoses • Neuromuscular or neurodegenerative disorders Category 4 Irreversible but non-‐progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death.

For example: • severe cerebral palsy • multiple disabilities such as following brain or spinal cord injury • complex health care needs and a high risk of an unpredictable life-threatening event or episode CPC is a Global Concern Children’s Palliative Care is a Global Concern The provision of high quality, appropriate and effective palliative care for children is a global concern (Martinson 1996)

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Child Mortality Rates Nearly all child deaths occur in developing countries, and almost half of those are in Africa (WHO 2008)

Child mortality figures are divided into:

• Perinatal conditions • Diarrhoeal diseases • Respiratory diseases • Malaria • Other diseases

Global Summary of the AIDS epidemic In areas of the world where the HIV/AIDS incidence is high, such as Africa, it is a major cause of death in children, whereas in other places the number is not significant. This can be seen through the number of new infections in children in 2008 per region: • sub-‐Saharan Africa -‐ 390,000 • Asia -‐ 21,000 • Latin America -‐ 6,900 • Middle East and North Africa -‐ 4,600 • Eastern Europe and Central Asia -‐ 3,700 • Caribbean -‐ 2,300 • North America, Western and Central Europe -‐ <500 • Oceania -‐ <500

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Cancer incidence Diagnosis • Approximately 166,000 children <15 are diagnosed with cancer annually • 84% of those children diagnosed with cancer live in resource-‐limited settings

Deaths • Approximately 80,000 deaths from cancer in children < 15 annually • 90% of those children dying from cancer live in resource-‐limited settings

The incidence is increasing...........are we ready? The Global Picture Introduction Whilst Children's Palliative Care is needed worldwide, the incidence of disease, impact of the disease and numbers requiring care will vary according to the country and region. This map shows some of the variations seen in each of the regions of the world North and South America • 25% of the population of the Americas is <15 years • <5 mortality in the Americas is 1.8%, 4.9% lower than the global average of 6.7%, with <5

mortality being 7.8 per 1,000 live births in the USA. • Life expectancy is 76 years. for example, in the USA it is 78 and in Mexico it is 76 years.

(WHO 2010) Europe • 18% of the population of Europe is <15 years • <5 mortality in Europe is 1.4%, 5.3% lower than the global average of 6.7% • Life expectancy is 75 years. for example, in the UK and the Netherlands it is 80 years. (WHO

2010) Asia • 31% of the population of South-‐East Asia is <15 years • <5 mortality in South-‐east Asia is 6.3%, 0.4% lower than the global average of 6.7% • Life expectancy is 65 years. for example, in india it is 64 and in Russia it is 68 years. (WHO

2010) Western Pacific Region • 21% of the population of the Western Pacific Region is <15 years • <5 mortality in the Western Pacific Region is 2.1%, 4.5% lower than the global average of

6.7%

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• Life expectancy is 75 years. for example, in New Zealand it is 81 years (WHO 2010) Africa • 41% of the population of Africa is <15 years • <5 mortality in sub-‐Saharan Africa is 14.5%, 7.8% higher than the global average of 6.7% • Life expectancy is 53 years. for example, in Uganda it is 52 and in Zimbabwe it is 42 years.

(WHO 2010) Difference’s between children’s and adult palliative care Are children unique? Children are unique and are not just 'little adults' Whilst there is significant overlap between adult and children's palliative care, there are also significant differences, for example:

• communication with children may be harder than with adults • the pharmacokinetics and pharmacodynamics of drugs with children differ than with adults • children's understanding of death and dying changes with age • the ethical dilemmas vary as children, by law, cannot give consent, although they can give

assent • children often fear separation from their families

Differences between adults and children's palliative care can be divided into four groups: 1. Child related differences 2. Family related differences 3. Programme related differences 4. Other differences Child related differences The child: • is not legally competent; • is in the process of development; • often lacks verbal skills to describe needs, pain etc; • sometimes protect parents/ caregivers at their own expense; • are often in a hospital environment that is frightening and foreign to them. Family related differences The family: • want to protect the child; • want to do everything possible to save the child; • may have challenges with siblings and how they are coping with the situation; • fear that care at home is not as good as in hospital; • need relief from the burden of care; • will have differing bereavement needs. Programme related differences Many programmes: • will not focus specifically on children as in many places there are few programmes focusing

on children specifically; • will therefore have a poor understanding of issues of children’s palliative care; • will have inadequate skills among providers; • may have little literature available; • may fear the use of opioids and believe that children do not feel pain; • develop in isolation.

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Other differences Other differences include: • the way children react to poverty; • the disease burden; • breakdown of families; • child-‐headed families; • granny-‐headed families; • abuse. • no access to resources Models of Children’s Palliative Care Introduction Palliative care is a philosophy of care and there is no one way of delivering care. Across the world, different models of providing palliative care for children have arisen. A few of them are discussed here.

When looking at the different models think about the following: • Which is the most appropriate model of providing children's palliative care for my

situation? • What are the strengths and weaknesses of the different models of care? • Do I know anyone providing each of the models of care? • If I am not familiar with a model -‐ how can I learn more about it? CPC within a general PC/ hospice programme Often children's palliative care will be provided in a general palliative care or hospice programme i.e. one that cares for adults as well as children One advantage: • This is an important way of providing care for the children as near to their homes as

possible -‐ due to the need, the number of children specific programmes is less therefore making traveling distances longer.

One disadvantage: • There may not be many staff trained in children's palliative care and the number of children

seen may be small. Inpatient palliative care units Specialist children's inpatient units can be found as independent organisations, hospices or within a hospital or other facility. They offer both respite care as well as symptom control and care at the end-‐of-‐life.

One advantage: • Children who are really unwell and whose symptoms have not been controlled can be

admitted in order to manage their symptoms. One disadvantage: • They can be expensive to run and may be a long way from the child's home. Day care programmes Day care programmes can provide palliative care services to children from a limited distance. It enables children to come for the day and received care such as blood transfusions etc without need for admission.

One advantage: • It means that children who are at home can get some extra support as needed and gives

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the carer some respite One disadvantage: • They may be far from the child's home and this is expensive both in financial terms but also

in terms of time traveled for a very sick child. Hospital based children’s palliative care In some hospitals, children's palliative care teams will provide palliative care services for children in the hospital, whilst they remain under the care of their original doctors e.g. oncologists. They will then refer them on to a community organisation on discharge. One advantage: • These teams can provide care for a large number of children within the hospital One disadvantage: • There may not be a community programme to refer the children to on discharge. Challenges to providing Children’s Palliative Care Introduction What do you think are some of the challenges for providing palliative care to children? Take a moment to think about some of the factors that could influence the provision of children's palliative care? Think about some of the potential differences or challenges in different parts of the world? Try and identify some of the challenges that you face in providing palliative care for children? Whilst some of the challenges are 'generic challenges' and can be found anywhere, some of them may be particular for resource limited or resource rich settings -‐ the following steps identify some of the challenges in these areas, many of which you will have already identified. Generic challenges Some of the 'generic' challenges experienced in providing palliative care for children include: • there are few programmes that focus specifically on children -‐ therefore there is limited

expertise; • there may be poor understanding of some of the issues and the need for children's palliative

care; • the differing disease trajectories and understanding by the child of what is happening to

them; • a lack of appropriate and affordable training on children's palliative care; • there is still a long way to go in terms of building up an evidence base for children's

palliative care; • often programmes develop in isolation without appropriate referrals and linkages; • differing cultural and spiritual beliefs.

Challenges for resource-limited settings Some of the challenges experienced in providing palliative care for children in resource-limited settings include: • the overwhelming number of children requiring care, particularly in sub-‐Saharan Africa; • the number of orphans and a lack of care providers; • children will present late with their illness, due to lack of resources, finances and facilities; • the home situation of the children is often very hard, with many other things taking

preference for limited funds; • a lack of transport to help them access care, with facilities being far apart;

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• a lack of accessibility to essential medications for palliative care for children e.g. oral morphine;

• a fear of opioids and the belief that children do not experience pain; • often people are struggling with their basic needs e.g. food.

Challenges for resource-rich settings Some of the challenges experienced in providing palliative care for children in resource-‐rich settings include: • fewer numbers of children needing palliative care and therefore not seen as a priority; • due to the fewer numbers there are minimal facilities with minimal trained specialist staff; • the fact that not many children die adds a burden to the families of those that do, and

individuals do not know how to cope with it. The ICPCN Charter Introduction Despite the challenges, it is possible to provide high quality palliative care for children throughout the world. The ICPCN Charter sets out the International standard of support that is the right of all children living with life limiting or life threatening conditions and their families. More information about the charter can be found in the following sections. ICPCN Charter The ICPCN Charter can be downloaded from the ICPCN website. Translations The ICPCN Charter is available in the following languages, all of which can be downloaded from the ICPCN website:

• Afrikaans • English UK • English US • French • German • Hungarian • Italian • Japenese • Kiswahilli • Luganda • Ndebele • Norwegian • Portugese • Romanian • Russian • Sepedi • Sesotho • Setswana • Spanish • Tswana • Venda • Xhosa

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• Zulu ACT’s Charter Together for Short Lives (formerly ACT) have also set out the standards of support which should be available to all children and young people with life-‐limiting or life-‐threatening conditions, and their families. Whilst it has been developed for use in the UK in can be adapted as appropriate. The Charter can be downloaded from the ACT website. Exercise 1 Introduction You have been asked to do a presentation about children's palliative care in your country to a group of doctors. What are the key areas that you would need to include in the presentation? Think about general population data • Population in the country • Number of children <15 years of age • Percentage of population under 15 years of

age -‐ (Population curve) • Under 5 mortality rate Think about the morbidity and mortality data of children in your country • spectrum of illnesses that children under 15 suffer from • main causes of death of children under 15 • main place of death of children under 15 (if available) Think about service provision for children in your country • general health service provision for children • specialist service provision for children e.g. oncology, renal, etc. • palliative care service provision for children:

o is there any? o how many children does it reach? o where is the place of care? o what models of palliative care service delivery are being used? o can they access the essential medications needed? o how many children who need palliative care are unable to access services?

Think about what this means in terms of palliative care for children in your country • are more services needed? if so where and how? • is there enough training for children's palliative care available -‐ if not how can this be

improved? • are there medications available? if not how can this be improved? • what are the challenges for the delivery of palliative care for children in your country? Finally... Think about the Key messages that you would like to leave people with.

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August 2012


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