39 - Education and training | Oxford Textbook of Palliative Care for Children (Liben, Oxford Textbook of Palliative Care for Children)

Editors: Goldman, Ann; Hain, Richard; Liben, Stephen

Title: Oxford Textbook of Palliative Care for Children, 1st Edition

> Table of Contents > Section 4 - Delivery of care > 37 - International aspects

International aspects

Ann Goldman

David Southall

Simon Lenton

Introduction

The global perspective of palliative care, focusing on care for adults, has recently been the topic of two comprehensive reviews [1, 2]. These record the expansion of services in the better resourced countries since adult palliative care began in the early 1960s, and strongly emphasize the huge needs remaining in the poorly resourced countries. Comparative information about palliative care in children in different parts of the world is still sparse and preliminary [3, 5], though a comprehensive study of hospice and related developments in Eastern Europe, which includes care of children, has recently been published [6]. Current information about the epidemiology of children with life-limiting illnesses has been assessed in Chapter 1.

Many individual paediatric palliative care programmes, in different countries, have been described in the literature, but certainly, even more exist, or are being developed. Currently, the details of many of these individual programmes, and even of the majority of overall situations nationally, are not available. In spite of the additional information generously given through personal communication, the picture we are able to compile here is, without doubt, incomplete. Our apologies to those working on programmes, and in whole countries, whose experiences have not been acknowledged. We would welcome information that will help towards compiling a more comprehensive worldview for the future.

Barriers to care

There is still a very wide variation in awareness and understanding of the philosophy of paediatric palliative care. Even in the countries where there is a growing acknowledgement of its importance, the development of services often lags behind. In those countries where needs seem to have been recognised, services sometimes have evolved primarily in relation to oncology patients, and often, support has only extended to children with other life-limiting illnesses later. As with many new concepts and practices in health care, a determined and persuasive locally based leader in the field, parental pressure and active voluntary organisations have been powerful forces for progress. Home based care, community teams, hospital outreach, respite care, free-standing hospices, and bereavement programmes have all got roles to play. Exactly which evolves in each country, and how quickly paediatric palliative care can move forward, relates to the different barriers formed by culture, geography, health care systems, and, most important of all, resources.

Recognizing the need

Even though the numbers of children dying in resource-rich countries is small compared to adults, this is an insufficient explanation for the lack of acknowledgement of the needs of dying children and their families, both in the literature and in clinical practice. Some professionals and parents can find it difficult to accept the inevitability of a child's death and the need for palliative care; they strive to find further treatment options, sometimes at all costs.

In well resourced countries, the emphasis on technology and the triumphs of medical science have meant that the dying have become, in some ways, a symbol of failure, with their needs neglected. This is particularly so in relation to children. In addition, their care is highlycharged emotionally, and brings professionals face to face with their own mortality.

In the majority of poorly resourced countries, despite the fact that there are many children suffering from diseases that are incurable, the concept of palliative care is just not awake . To some extent, this situation relates to the overwhelming need to provide emergency care within poorly funded health systems. Palliative care is still considered a luxury by some.

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Understanding the philosophy

Palliative care an area of medicine on the fringe of the law. (Trethewie, quoting a medical colleague, Personal Communication).

Many professionals still have only a partial or distorted understanding of the current approach to paediatric palliative care. They may hold a very restricted view of its scope as a multidisciplinary holistic practice, and equate it with pain management, opioid use, or even euthanasia. Many do not appreciate how palliative care can benefit the quality of life of children with all life-limiting illnesses, not just cancer. They may not be aware of the flexibility embedded in palliative care, and may not realise that it is not an all or nothing issue, but offers the possibility of running alongside treatments aiming to prolong life, as the situation evolves. Some clinicians may be reluctant to share their patients care, or discuss the possibilities of palliative care with them. All of these can contribute to lack of referrals, or, to very late referrals, to the detriment of the child's care [7, 11].

In some countries, there will be problems with the concept of aiming to relieve suffering, since a number of cultures regard suffering as an important part of living, as something inevitable, and something which should be endured, perhaps to strengthen character, or to ensure a better life in the hereafter. In countries where society accepts heavy corporal punishment in schools, severe physical punishment regimes, and the death sentence, introducing sea changes in attitude to suffering will be a major shift, which may not be welcomed.

Medical supplies and drugs

How will she die if she's not on morphine (Trethewie S quoting a medical colleague, Personal Communication).

Even in resource rich countries where opioids are available, there may be a reluctance to use them appropriately, due to misguided beliefs, ignorance and fear. There is also a lack of understanding about how to use them, with many health professionals still confused about tolerance, physical dependence, and addiction. Others lack even basic knowledge about doses, routes, and side effects.

In many countries, the main problems lie in persuading governments that the drugs used for palliative care, in particular opioids, are inexpensive, and should not only be made available, but provided in a way that is easy to access. Part of the difficulty is related to resources, although many of the essential drugs used in palliative care are not particularly expensive. However, the greatest problem with the provision of drugs relates to attitudes to opioids. Although morphine is the most effective oral and parenteral drug for controlling severe pain, and is recommended by WHO, many countries will not provide the systems necessary to allow it to be used, even in their hospitals, and more particularly, in the community care of patients. Their argument is that it is a drug of addiction, and therefore, there are potentially major problems in controlling its use. They question whether safe control of the use of these drugs in childhood palliative care is possible. Tragically, many poor countries still have to contend with considerable corruption throughout their systems. When this turns to theft or misappropriation of powerful opioid drugs, there can indeed be serious consequences. However, the processes and systems needed for the introduction of opioids for medical care have been well worked out in many countries, and are not particularly difficult, they just require organisation and acceptance of the importance of making such arrangements. The State has a vital role to play in making it better for children by not restricting or blocking the availability of vital pain-relieving drugs out of security concerns, or outdated and mistak en beliefs about their appropriateness for use in children and the risks of addiction.

Healthcare systems

Many healthcare systems are currently not designed or sufficiently resourced to provide really good palliative care. Governments need to make a formal commitment to develop multidisciplinary care, not only in terms of adequate support for families at home, but also in terms of easy access and excellent communication between hospital and community care. Many countries have not made that decision, and so, although there may be pockets of excellent practice, the truth is that in almost all countries, there is still a heavy reliance on individual initiatives and voluntary organizations, rather than on planned and equitable services.

In addition, some healthcare systems have regulations which seriously limit the practice of good palliative care:

Example 1. There are problems in the United States with reimbursement from insurance systems, as hospice care cannot be funded whilst any curative interventions are still being undertaken. In addition, funding for hospice care is limited rigidly to the last 6 months of life. The current system also acts as a strong disincentive to the provision of palliative care and free-standing children's hospices. [9, 12, 34]. The lobbying and advocacy of Children's Hospice International is gradually educating the authorities to the special needs of children, enabling more appropriate models of care to be explored.

Example 2. In Canada, home care services in certain provinces are reimbursed according to specific tasks or interventions, and psychosocial care is not viewed or funded as a task (Frager G, Personal Communication).

Lack of education and trained staff

Almost all countries acknowledge that this is a considerable problem. Paediatric palliative care is still a young component

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of healthcare, and the number of experienced practitioners available as teachers is small. There are few training posts and courses available. In poorly resourced countries, the needs for training are enormous.

Some examples of current practice

From well resourced countries

Australia

Australia has been active in developing paediatric palliative care, with early involvement from oncology services, and also recognition of non-oncology patients needs [11, 13, 14]. Some highlights include:

hospital based specialist teams;
the development of two children's hospices in Melbourne and Sydney;
co-operation with adult and community based palliative care at home;
appointment of specialist paediatric palliative care physicians;
the establishment of a nurse training programme;
a physician training fellowship.

Recently an extensive national survey has been undertaken, with wide consultation across all the states, and site visits to 15 different paediatric palliative care agencies [11]. This survey has identified that there are a wide range of models of care across Australia, and that services are unevenly distributed nationally. Families, for the most part, have expressed a preference for children to be cared for, and die, at home. A comprehensive home-based service centred on collaboration, with specialist and hospital-based professionals working together with community and primary care teams, is needed to fulfil a family's wishes. Because of the widely distributed population, it is essential to utilise the already existing adult palliative care network, and strategies are being identified to support this network in working with children and families. For children and families who are cared for in hospital, improvement in appropriate facilities and expertise is needed, to make the experience as comfortable as possible. The review has identified gaps in services, barriers to care, and opportunities for improvements for the future.

Canada

Palliative care has a significant profile in Canada, compared to many countries. Commitment from the Government is evidenced by the Senate's report in 2000, Quality End of Life Care: the right of every Canadian [15]. However, there is still considerable scope for improvement in services for children, which lag behind adult provisions, particularly for those children with non-malignant life-threatening illnesses. Health care is designated a provincial responsibility, and there continue to be many provinces without formal paediatric palliative care services. Most of the current services are hospital-based consultation teams originating in the major urban centres (for example, Halifax, Montreal, Vancouver, Ottawa, Toronto, Calgary, and Edmonton). These multidisciplinary teams work inthe hospitals and liaise and back up local front line services to support families at home. The large geographic areas with scattered population have resulted in some innovative approaches to enable families to be supported at home:

good collaboration with local paediatric teams and adult palliative care;
tele-video and audio conference calls;
site visits requiring overnight stays;
production of one-to-one videos for teaching specific care for families and local teams;
Internet network of paediatric palliative care clinicians in Canada.

Canuck Place, Canada's first free-standing residential children's hospice, opened in Vancouver in 1995, and has close links with their hospital team. Further hospices are being developed in Montreal and Toronto.

Germany

The status of palliative care for children in Germany has been assessed through the project PATE (palliative care, therapy and evaluation in paediatric haematology/oncology), which was funded by The German Children's Cancer Fund. It was found that Germany's mortality rate for children from life-threatening illnesses of 1.03/10,000 is similar to mortality rates in the United Kingdom and Poland. The distribution of causes was: cancer, 31%; neuromuscular diseases, 20%; congenital, 16%; cardiovascular, 12%; and metabolic, 9%. They estimate that there are 15,000 children in Germany living with life-threatening illnesses.

There are a range of programmes established in Germany, including hospital-based teams, liaison nurses, home care by nurse-led agencies, and free-standing children's hospices (currently six). The services for children with malignant disease are more extensive, compared to those for children with other illnesses, although even in oncology, comprehensive programmes are not available at all centres. The number of children with malignancy dying at home, if a home care programme was available, was 68%, which compared with a figure of 39% for home deaths in a survey of all children dying

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from cancer. A comprehensive child-and family-centred model of care for all diagnoses is being introduced at Datteln, with an emphasis on home care and additional aspects of access to paediatric specialists, respite care at a children's hospice, sibling and bereavement programmes, and a consultation service for other health professionals. Access to paediatric nurses, or the few palliative care services, is difficult in rural areas, and adult community and palliative care nurses may be used.

Services are still unequally spread. Barriers come from the lack of recognition of the need, especially for children with non-malignant diseases, and from lack of funding.

New Zealand

Paediatric palliative care was included in a national review of paediatric specialty services in 1998 [16], despite the fact that it did not exist as a speciality at that time. This project, and subsequent work [17], identified that services were patchy, and neither standardised, nor co-ordinated. It also noted lack of respite care, training and bereavement services. The challenge New Zealand has identified is to deliver effective, culturally appropriate palliative care for a relatively small number of children over widespread areas, in an environment of constrained health funding.

The review recommended a cascade model, with a national specialist paediatric palliative care team supporting a network of local regional co-ordinators, who then work with local health care professionals. The networks could then work together to develop and monitor standards of care. Following this review, a small specialist team has now been established at Starship Hospital in Auckland. Other encouraging developments are some excellent examples of collaboration between adult palliative care and child health services, and the opening of video-conferencing facilities at Starship Hospital. However, the establishment of local co-ordinators has been variable, and the awareness of care needs for non-oncology patients and for respite care [18] is still limited.

United Kingdom

Paediatric palliative care began in the early 1980s, with a number of separate initiatives, including outreach nurse specialists in oncology, the first children's hospice, bereavement programmes, and the appointment of the first specialist paediatric palliative care physician. As more programmes developed, the need to work more closely and systematically became apparent. The organisation ACT (Association for Children with Life-Threatening or Terminal Conditions and Their Families) was formed as a charity in 1992. It acts as an umbrella group for professionals and families, who can speak with one voice for children's palliative care. It aims to advocate on behalf of children with life-threatening illness and their families, and campaign for improved provision of care. It promotes good practice, supports professionals through education, and offers an information service. ACT, in association with the Royal College of Paediatrics and Child Health, worked to publish a guide to the development of paediatric palliative care services for children in 1997 (2nd edition 2003); this was followed by a companion document for young people aged 13 24 [19, 20]. These have influenced the development of a comprehensive approach to paediatric palliative care in the United Kingdom.

The model advocated is inclusive of all children, and suggests the designation of lead co-ordinators in paediatric palliative care in each health district, working with local multidisciplinary community palliative care teams to support families in day-to-day care. Local community teams work in close co-operation with hospital based care, hospital specialist outreach teams (e.g., oncology), and voluntary organisations, including the children's, and more recently, young people's hospices. Services are becoming more equitable across the country, but gaps still remain. The national government has encouraged development of local teams, and made some contribution in resources towards this (through Diana teams and New Opportunities Fund money), but many services still depend heavily on charity.

The United States

The United States has been involved in promoting hospice programmes (equivalent to palliative care in the United Kingdom and Canada), since the late 1970s. There are a wide variety of programmes in a range of settings; examples are highlighted in the recent report, When Children Die [12], and on the Robert Wood Johnson web site [21]. The majority have involved home care, but some are hospital outreach projects, and others are community based. There are relatively few inpatient hospice beds for children, though some are available associated with adult programmes, some in children's hospitals, and some in the first free-standing children's hospices that have opened recently. Programmes have also varied in whether they specifically accept children with malignant diseases, or children with all life-threatening illness. Currently, there are about 450 specifically child-focused hospice, palliative care or home care services, and in addition, almost all of the over 3000 adult hospice programmes in the United States will now accept children. This compares with the availability of only 4 of 1400 programmes to children in 1983 [22].

Since 1983, the organization of Children's Hospice International [22] has been advocating and actively campaigning on behalf of children with life-threatening illness

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and their families, promoting hospice care, tackling the barriers to its introduction, and promoting education and resources for professionals. Recent years have seen a noticeable increase in awareness of the special needs of children and families as evidenced by:

The American Academy of Pediatrics Committee on Bioethics and Hospital Care's statement promoting an integrated model of paediatric palliative care in 2000 [23];
The publication in 2002, and associated publicity of the project and recommendations of When Children Die improving palliative and end-of-life care for children and their families [12];
The CHI Programme for All Inclusive Care for Children and their Families (CHI-PACC). This programme co-ordinates a group of demonstration models supported by the government. These promote palliative care from the diagnosis, and support throughout the illness; they allow palliative care alongside disease-directed treatment, and include respite and bereavement care. They have been designed to counter the inappropriate reimbursement system, which has severely limited access to appropriate palliative care in the past. They also offer free training and educational material [22];
The Initiative for Pediatric Palliative Care (IPPC) funding novel programmes in a number of hospitals; promoting a variety of quality improvement projects in paediatric palliative care [24];
Increased number of publications and commentaries in high profile journals recently [23, 25 29].

These suggest that a much wider understanding of the philosophy of paediatric palliative care is developing and tackling some of the barriers to its wider use, with optimism for the future. However, recent assessments of the experiences of children and families reveal that problems still exist, and are a salutary reminder against complacency [25, 30].

Other European countries

Evidence from the literature and personal communications suggests there is a growing awareness of paediatric palliative care across Europe, but comprehensive services are still not part of most countries' national health plans, and often remain sparse and unequally spread [5, 31].

An example where a wider national view has been taken is in France. Following a study there in 1998, a four-year plan was developed to encourage palliative care at home through the setting up of networks to co-ordinate and train professionals, to organise access to home carers and respite, and to develop the roles of volunteers [32, 33]. The results of this effort have not been reported yet.

The most active home care programmes in many countries have originated in paediatric oncology units, and this is reflected in the literature [34, 39]. In some countries, for example, Belgium and Ireland, some of these initially oncology teams have now evolved a broader brief, and work with all diagnoses.

On the whole, provisions for children with non-malignant diseases are much less clearly recognised as part of palliative care, and tend to depend on individual paediatricians, such as neurologists and their teams.

Adult palliative care teams sometimes contribute to paediatric palliative care, particularly in countries with smaller and widespread populations, however they are more often at home with children with malignancies, and may be reluctant to help with longer terms and rarer conditions.

Educational programmes are helping raise the profile and understanding of the philosophy of paediatric palliative care and training staff in its practice [31, 40].

Hong Kong, Japan, and China

Support from the time of diagnosis, palliative care at home, and bereavement follow up for children with cancer and their families, are well established in Hong Kong, provided by multidisciplinary health care professionals in the community, and funded by the Children's Cancer Foundation, working alongside hospital teams [41]. Children with non-malignant life-threatening illness have no structured palliative care service available, but there is evidence of growing interest in recent times [42].

In Japan, paediatric oncologists and nurses have identified a need to develop home-based terminal care [43, 44]. There is no mention of palliative care for children in China in the literature, but concerns about pain management in children with cancer have recently been reported [45].

The Middle East

Some programmes have been established in major centres, for example, Saudi Arabia [46], primarily focussed on children with cancer, access to palliative care is not available for the majority of children in this area. The first Middle Eastern Paediatric Palliative Care Meeting is taking place in Kuwait in 2005 and plans for their home care programme and hospice have been launched.

From moderately resourced countries

Belarus

Belarus has a population of 10 million, of which 25% are children, living in an area of 208,000 sq.km. There are currently children's hospice programmes in 4 of the 6 administrative districts.

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The Hospice in Minsk was the pioneering programme, and remains the largest [47]. It began in 1994, and now has a multidisciplinary staff, including 2 physicians, and offers:

a home care service (24 hrs, seven days a week)
respite care
a day centre programme
education for health care professionals.

Palliative care programmes are provided through nongovernmental organizations, in close cooperation with the local health authority. The hospices work closely with their local children's hospitals and oncology centres. The projects have developed in the face of difficult political tensions, complex bureaucracy and uncertainty (for example, three different health ministers in less than a year). They are also limited by a serious lack of access to medication such as anti-emetics and analgesics and lack of equipment both medical, such as oxygen concentrators and syringe drivers, and administrative, for example, mobile phones.

Poland

Poland has a commitment to integrating palliative care into the national health care system. The first paediatric service was founded in Warsaw in 1994, 13 years after the first adult service was registered in Cracow. It was the first dedicated children's hospice programme in Europe, outside of the United Kingdom. Currently, a network of 32 hospice programmes provides care for children, of which 5 are specifically paediatric, and 27, are adult, with in-patient services for children at two [48, 50].

Around 1200 children die from life-limiting conditions in Poland each year, which is a death rate of 10.4 per 10,000 children. Between 1985 96, 74% died in hospital and 26% at home, and of those dying at home, 48% had cancer, while the remaining 52% non-malignant diseases [49].

The Warsaw Hospice for Children is the leading children's project and has a multidisciplinary staff, including nursing, medical, psychology, chaplaincy and physiotherapy and it provides:

a home care service (24 h, seven days a week)
pain and symptom management
bereavement support for parents and siblings
teaching and training programmes
research.

Apart from providing service to individual children and families, they take an active role in developing standards, evaluation, and advocacy on behalf of all children with life-threatening illness and their families, with both the public and the government.

Romania

Romania, while similar to other European countries with regard to prevalence and incidence of the majority of life-threatening illnesses in children, has the added challenge of having to manage over 50% of all the paediatric AIDS cases in Europe. In 1997, there were 4,376 paediatric AIDS cases registered, and this is probably a conservative estimate.

There are a number of active palliative care programmes for children, which have developed through nongovernmental organizations working alongside the national health system [51].

There are two home care programmes linked to adult hospice projects in Brasov and Oradea, which work with children with all diagnoses. These are able to offer home care, symptom management, psychosocial and practical support, short-term respite care, and bereavement follow up. In addition, there are in-patient beds for children at Brasov, and they run the national education centre for palliative care.
Two paediatric oncology units also run home care programmes.
There are several residential facilities, opened by charities, to help children with HIV/AIDS. Initially, these began with the aim of offering terminal care, but as the prognosis for these children has improved, many are now providing more long-term care.

Some of the problems and barriers those working in Romania have identified are:

Lack of understanding in both professionals and the public, with only pockets of awareness around the country;
Lack of statistics and databases on children with cancer, AIDS, and other diagnoses because of which identifying the children who might benefit from a palliative care service has been a slow process;
Legislation regarding the prescribing of opioids, which is very limiting in relation to who can prescribe and how much can be used. Many fears and myths are still present in relation to opioid use.

Other Eastern European countries

Pioneering programmes have been introduced in a number of cities in other countries, such as Bratislava, Slovakia; Riga, Latvia, and Moscow, Russia. These have a common feature in that they involve collaboration between state and nongovernmental organisations, and have grown up primarily

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through the inspiration of innovative and determined local leaders. They have evolved from a hospital base with multi-disciplinary teams and outreach home care, and are leading in their countries in providing a model of care, in education, and in tackling misunderstandings about, and barriers to, paediatric palliative care.

Central and South America

Costa Rica has an active and comprehensive childrens palliative care service, initiated by a determined and energetic leader. It has been functioning since the late 1980s, and is based in the national children's hospital, with outreach across the country. Although initially it served children with cancer, children with all diagnoses have been eligible for care since 1995. It is integrated into the government social security system, with additional support from a national charity. Through education and advocacy, the government has been sensitised to the palliative care needs in the country, and has declared it a constitutional right of every Costa Rican, to die with dignity and with no pain.

Argentina has 4 hospital-based children's services in different stages of evolution, and Mexico has also started a dedicated children's palliative care programme; a number of other countries have some adult services (Colombia, Brazil, Chile, Ecuador, Paraguay, Uruguay), but as yet, nothing specific for children.

From poorly resourced countries

There is a massive lack of palliative care services for children with cancer and other life-limiting illnesses in the poorly resourced countries of the world. Here, more than 90% of such children receive only local remedies, and in addition, there is the devastating problem of HIV and AIDS. This is particularly the case for sub-Saharan Africa, but also for parts of South East Asia.

In these countries, the AIDS pandemic continues unabated, and of the 40 million people currently living with HIV or AIDS, almost 75% are in sub-Saharan Africa [52]. Despite the efficacy of anti-retroviral drugs (ARV's) in reducing perinatal HIV transmission in this population [53], the infrastructure to undertake this relatively straightforward form of treatment does not exist, even though one of the drugs, (nevirapine), and rapid testing for HIV have being made free for eligible countries (Boehringer Ingelheim and Abbott Laboratories, 2003). As a consequence, 2.4 million children aged <15 years of age are living with HIV/AIDS in sub-Saharan Africa. In 2002, there were 700,000 newly infected patients, and 580,000 deaths, or 2,000 deaths per day, as opposed to 500 per year in either the United States or Europe [52]. Between 25 39% of infected African women transmit HIV to their offspring [54], but the number of children living with HIV/AIDS is lower than one would expect, due their high mortality in early infancy. It is estimated that half of all children infected permanently with HIV die before their first birthday, and most of the remaining die before their fifth birthday [55].

The commonest causes of severe pain in HIV/AIDS are cryptococcal meningitis (requiring fluconazole), oesophageal candidiasis (requiring fluconazole and nystatin), herpes simplex and zoster (some response to expensive acyclovir), and peripheral neuropathies.

Another emerging crisis is the orphan status of so many infected children. It was estimated that by the end of 2001, 880,000 children will have been orphaned as a result of HIV/AIDS in Uganda alone [55]. Given the scale of the problem it is amazing, and a credit to African society, that most of these orphans have been absorbed into extended family networks.

Given the lack of system support, even with donated ARV's, the run-down and poorly equipped hospital services, and the inability to undertake reliable therapy, the need to support this group of HIV positive children by providing care in their homes, and thus supporting their families, is clearly an issue that falls into the category of palliative care.

Africa

Much work in palliative care, particularly with respect to HIV/AIDS, is going ahead in Egypt, Kenya, Malawi, Namibia, South Africa, Tanzania, Uganda, and Zimbabwe. This work is largely concentrated around adult hospices and home care programmes, education of community health workers in the practice of palliative care (for example, in South Africa, more than 30,000 health workers each year are being trained in palliative care), and attempts to persuade governments to make morphine available both for hospital and community care. As a consequence of advocacy, morphine is available nearly throughout Malawi.

Other initiatives that are contributing include:

The WHO, in close collaboration with its regional office for Africa, has developed a project entitled Community Health Approach to Palliative Care for HIV and Cancer Patients in Africa. In 2002, the 5 countries participating were Ethiopia, Botswana, Uganda, Tanzania, and Zimbabwe.
A new trans-national association representing palliative care services in Africa (The African Palliative Care Association) has been established [56].
The United States-based Foundation for Hospices in Sub Saharan Africa (FHSSA) also generates support and partnership for African home-based hospice and palliative care services caring for those who are dying of HIV/AIDS [57].

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A most important announcement was the US$15 billion committed by President Bush to HIV/AIDS in key African and Caribbean Nations. 15% of this is for palliative and supportive care, and care for orphans.
The St. Nicholas Children's Hospice Programme, which has been set up in South Africa.
A new book for families with AIDS has been written by members of the Association of Women Living with AIDS (NACWOLA) in Uganda.

However, one study from South Africa [58], involving the documentation of do not resuscitate orders and comfort care plans, showed that pain and distress were found in the last 48 h of life in 55% of paediatric patients in the wards of the hospitals. Half of the patients with pain and distress, including 16 with a comfort care plan, received no analgesia. There have also been difficulties in undertaking home based palliative care, which include denial of the prognosis and fear of causing death, exactly the same issues as in rich countries. In hospitals, opposition to palliative care by some senior physicians, who believe that it will accelerate death, has been a major problem.

Uganda

Uganda has made major efforts to address the issues around palliative care, which was first introduced through Hospice Uganda in 1993. In 1998, Mildmay International, in collaboration with the Ministry of Health, opened a centre of excellence, with the President as Patron. This not only provided local care, but also palliative care training for Uganda and for other African countries. Such training is now part of the undergraduate curriculum in Makerere and Mbarara Medical Schools. There are 80 members of the Palliative Care Association of Uganda [59], with much time spent on training. As with most of sub-Saharan Africa, doctors are scarce, one for every 50,000 people, and so, trained nurses and community health workers are essential, including those who provide traditional healing services. One very innovative move has involved a statute that allows palliative care nurse specialists and clinical officers (non-doctors) with palliative care training to prescribe morphine. The aim is to have at least one palliative care specialist in each district. By 2002, morphine had been introduced into 57 districts, with the support of the Ministry of Health [60].

A programme that has been supporting children with HIV/AIDS in Uganda since the beginning of 2001 (run by the charity Child Advocacy International-CAI), provides one potentially sustainable model for the provision of palliative care in a poorly resourced country. At the end of 2001 in Uganda, there were 110,000 children infected with HIV, and very large numbers orphaned as a result of fatal HIV infection in their parents.

Children are recruited from the out-patient clinics in the main teaching hospital in Uganda, Mulago Hospital. Each child/carer receives pre-HIV-test counseling, and those who are HIV positive then receive care at the clinic, provided the family is able to afford to attend. Antibiotics and anti-fungals are often unavailable, due to their cost.
To enrol in the CAI programme, the only criteria were that the child has a positive serology result, and is an orphan, that is, he or she has lost one or both parents; in practice, this includes most children who attend the clinic. Many children are enrolled and supported while critically ill as in-patients.
After enrolling, a monthly home visit is made to every family. Every effort is made to avoid stigmatisation, so a family can enrol without home visits and still receive the same level of support, in terms of food and medication, as do the other families. Families are visited on an appointed day, circled on a calendar when it was rare not to find the families at home.
The personnel employed are local nurses, trained in counselling, and a driver. Resources include a vehicle, an office, supplies of medication and food, and a database to record each interaction with every child. Drugs and medical supplies were available in a trunk carried in the vehicle.
Vitamin A is given every 6 months, and mebendazole every 3 months, to all children in each family. The family are supplied with oral rehydration solution (ORS) and paracetamol, and educated in their use. Each HIV infected child is provided with prophylactic co-trimoxazole and multivitamins.
At each home visit, opportunistic infections are diagnosed and treated, according to guidelines based on the Manual of International Child Healthcare 2002 [61]. Guidelines for treatment are algorithm-based, and are easily followed by nurses and parents.
Each visit creates an opportunity to give nutritional advice, with particular emphasis on the value of using local produce. The aid agency, with a grant from the Irish Government, has purchased some land, and encourages the caretakers to grow their own food on plots of this land. The World Food Programme provides 75 kg of basic food for each family every month.
When children are hospitalised, all medication is provided without this assistance, most carers could not afford hospital
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care. If children on the programme become sick between home visits, they can attend the office, which is open 6 days a week.
Psychosocial issues are discussed at monthly carers meetings, with up to 100 carers present, and monthly child support meetings. Basic health education, education about HIV and its prevention, recognition and management of opportunistic infections, pain control, nutritional advice, and emotional support are discussed. Invited speakers include child psychologists, nutritional experts, and paediatricians. These meetings provide a forum for discussion among carers, and allow the formation of support networks. Carers are also able to discuss concerns with the team nurse in the privacy of their home. If the child is sufficiently mature, disclosure of the diagnosis and its potential implications are considered. If the mother is alive but unwell, discussions about the ongoing care of her children after her death are undertaken.
A forum for infected children has been developed, called the Children's Club, and is attended by 50 children, who are aware of their diagnoses with the carers permission. The club is led by a 16 year-old child, with facilitation by an experienced social worker and counsellor.

This programme was established at the beginning of 2001, and by the end of 2003, had cared for 300 children, with a median age of 7 years. The children's primary carers were their sick mothers (48%), fathers (5%), or extended family (47%). The main HIV-related clinical issues experienced by this cohort of children were respiratory failure, severe skin problems, diarrhoea, parotitis, and oral and oesophageal candidiasis.

Over a 10 month period, 15% of the children enrolled died, at an average age of 7.8 years. The causes of death varied, but tuberculosis and wasting, often secondary to oral and oesophageal candidiasis, played a large role. Most patients died after suffering many years of chronic ill health; indications included being too short of breath to walk, much less play. Despite the programme, most children ended their lives in a state of severe malnutrition, partly resulting from oral and oesophageal candida, and chronic diarrhoea.

This type of low cost programme supporting the carers of children with currently fatal HIV infection that is not yet adequately treated with a specific system of effective ARV drugs, can substantially improve the quality of life for children and their carers. It is based in the home, addresses malnutrition through the provision of home grown foods, manages opportunistic infections, supports carers, educates on HIV transmission, and aims to relieve painful and distressing symptoms, and is at least an attempt at palliative care for this disastrous problem. A similar approach can be taken for the care of other life-limiting conditions, such as cancers and severe neurological/developmental disorders in poor countries.

Bosnia and Kosovo

These 2 countries have relatively recently been involved in major armed conflict. As a result, there has been a considerable input of humanitarian medical aid. One of the main problems identified was a minimum availability of pain control, and complete absence of palliative care, for both adults and children. However, like sub-Saharan Africa, the family structures inboth of these countries are extremely strong, and can support community (home) based programmes of health care, despite a scarcity of community nursing staff. In both countries, Child Advocacy International was able to introduce palliative care for terminal malignancy in children, by training family members on how to undertake the basic medical components of palliative care for such children in their homes. Thus, parents, grandparents, or siblings were trained to:

administer oral and subcutaneous infusions of opiate and sedative drugs;
pass and care for urinary catheters;
care for pressure areas, for the mouth, and prevent and/or manage constipation;
manage and pass nasogastric tubes for feeding and fluid administration.

Mimosa, a 14 year-old girl from Kosovo. Cared for at home by her parents, who had been trained to provide palliative care, including morphine and urinary catheterization. She suffered from a rhabdomyosarcoma which led to paraplegia. Permission to publish this photograph was given by Mimosa and her family.

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Improving children's palliative care worldwide

The overall goal

Ideally, the goal of children's palliative care is to achieve the best quality of life for patients and their families, consistent with their values, and regardless of their location. In effect, the family is assisted to hope for the best, cope with the day-to-day, and prepare for the worst. A model in which the components of palliative care are offered at diagnosis, and continued throughout the course of the illness, whether the outcome ends in cure or death is widely supported [19, 62].

No randomized, controlled trials of interventions for children and families, specifically with life-threatening illnesses, could be found in the literature, although there are examples for chronic illnesses which are likely to be applicable to life-threatening illnesses [63, 64]. There are, however, many descriptive studies which conclude that the aims and objectives of a service should be to help the:

Child by

maintaining independence;
providing good symptom control;
recognising the changing needs of children as they grow and develop;
improving quality of life;
involving children in decision-making.

Family by

promoting family participation in defining the priorities for care;
providing accessible information about the condition, prognosis and options available;
supporting choice over the venue of death, according to family wishes;
promoting caring and connectedness with health care professionals;
enabling parents to retain responsibility for their dying child [65];
reducing the psychosocial impact on parents, siblings, and others;
providing support for practical problems relating to day-today living;
providing respite care;
recognizing the child as special, while retaining as much normality as possible within the child and family's lives.

The literature provides many suggestions on how services can best achieve these objectives, and different countries need to plan and develop from these, according to their epidemiology, resources, geography, and healthcare services:

multi-agency teams, able to deliver care in a variety of settings, but predominantly at home;
specialist palliative care teams, which support primary and secondary care teams delivering palliative care;
comprehensive assessment of needs for both child and family members;
practical and explicit care planning;
planning ahead for expected complications/crises;
a key worker to act as a co-ordinator and advocate on behalf of families;
24 h access to a service delivered in a setting that is desired and/or appropriate to their needs;
good co-ordination of care, at any moment in time;
facilities for respite care;
continuity of care over the lifetime of child, including transitions, and into the bereavement period;
easy access to hospital;
clear standards and quality assurance of services.

Introducing paediatric palliative care in resource poor countries

Rational priority setting in the face of overwhelming poverty and increasing inequalities is extremely difficult. The predominant threats to health in the developing world are malnutrition, infectious disease, social disorder, and economic exploitation. Public health and logic would dictate the need to address these determinants of health, before attempting to develop health services, including palliative care for children. The dilemma is knowing where to invest limited resources to achieve maximum effect.

Whilst few would dispute the aspirations of human rights and palliative care, and nobody would wish to die unsupported and in pain, the reality for the 2 billion people worldwide who are living in extreme poverty is that these ideals are likely to remain out of reach for many years to come.

It is tempting to tackle individual diseases, for example, HIV/AIDS, malaria, tuberculosis, or the major determinants of health, for example, nutrition, water, sanitation, and housing,

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but even these isolated, targeted approaches are unlikely to have a significant impact in environments of civil unrest, economic exploitation, and corruption. For maximum impact, there needs to be a consistent approach that integrates social, environmental and economic issues, and assesses their impact on health, disease, and health service development. This approach is equally relevant to both the developed and the developing world. It is encapsulated in the sustainable development/agenda 21 movement that was launched in Rio de Janeiro in 1987 [66, 67].

Tackling the determinants of health will initially have an overall higher priority than health service development in many poor countries. However, in reality, aspects of both will be addressed simultaneously. In addition, there will be occasions when charitable initiatives, aid or development, or other humanitarian initiatives will promote the development of individual programmes, such as palliative care, within the context of the bigger picture. Where should these initiatives start, and what should their priorities be?

There needs to be:

Assessment to define local needs, health system capacity and community preferences;
Selection of effective interventions capable of meeting local needs, that can be delivered locally;
An appraisal of alternative delivery strategies is it better to target one condition with great effect, or many conditions with less effect?
Implement change, and then check whether the interventions are having the expected effect;
Invest in longer term infrastructure mainly education and training to maintain and improve on the initial investment [68].

In reality, it is also important to recognize that many aid initiatives have a short life, bringing in new resources that are not normally available locally, and are often dependent on outside agencies, which may have priorities that are not shared by the local community. The sustainability of any project has to be realistically addressed by both the donors and the local people before it starts. Short-lived projects should act as catalysts, enabling local people to achieve their own aspirations with their own resources, rather than imposing goals, values, and ideals that are not owned locally. The absence of evidence-based research is acknowledged [69], and should drive research and evaluation to determine what is effective in the longer term.

Palliative care developments should, therefore, build on existing health services, so one pre-requisite would be some existing health service infrastructure. Education and training in the basic principles of palliative care to increase the capacity, both in terms of numbers and competence, of existing health care workers is a necessary starting place. Use of family members, community volunteers, and using traditional healers/herbalists is better than creating parallel or separate services, and the use of home-based palliative care, wherever possible, reduces capital costs, but is often less appealing to donors [70].

Health workers involved in adult palliative care, and the WHO have identified policies and strategies for developing adult palliative care, using a public health approach [2, 71, 72]. Many of these organizations and projects have a strong reputation, and have developed networks of communication links and models of good practice. Those of us working to improve paediatric palliative care can learn from these established programmes and work alongside them, highlighting the special needs of children as well as developing specific paediatric projects.

Children's rights

Children have rights that are universal, albeit to very different degrees, depending on where they are living in the world.

The Ottawa Charter 1986 recognises the importance of peace, shelter, education, food, income, stable ecosystem, sustainable resources, social justice, and equity. All of these are initially of a higher priority than the development of health services.

The UN Convention on the Rights of the Child (UNCRC) [73], comprises 54 separate articles setting out the rights of all children. It covers the areas of civil rights and freedom, family environment and alternative care, health and welfare, education, leisure and cultural activities, and special protection measures, for example, child labour, trafficking, juvenile justice, and sexual exploitation. It can act as an important starting point in considering worldwide paediatric palliative care, as all countries except the United States have signed the UN Convention on the Rights of the Child, and therefore, formally agreed with the articles. This argument can help as a lever to ensure that there is at least discussion about the importance of the relief of suffering, the importance of pain control and palliative care, and therefore, the most appropriate services needed to ensure them.

Four principles embody the spirit of the CRC, and are fundamental to the interpretation of all the other rights. They are relevant across the world. They are:

The best interests of the child (Article 3), which establishes that in all actions concerning children their best interest should be a primary consideration;

Survival and development (Article 6), which prioritises not only children's rights to survival and development, but also their right to develop to their fullest potential in every respect, including their personality, talents, and abilities;

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Non-discrimination (Article 2), which establishes that children's rights apply to all children without discrimination of any kind, for example, on grounds of gender, disability, ethnicity, religion, and citizenship;

Participation (Article 12), which sets out the principle that children should be listened to on any matter which concerns them, and their views given due consideration in accordance with their age and maturity.

From these general statements, individual services can develop their own philosophies and principles, to guide the development of services when there is an absence of robust evidence. Philosophy generally relates to people, and principles relate to services. Examples are given below:

Philosophy

Children have rights, which must be respected and promoted, for example, the right to a safe and healthy environment, education, good nutrition, and a secure and loving family life.
Children should be seen as children first, recognising their changing needs and abilities as they become older, rather than as a disease or problem.
Parents and children should be actively involved in decisions about the children's care.
Each child is a unique individual, and racial, linguistic, religious, and cultural background should be respected.

Principles

Services should be evidence based, and balance both the quantity and quality of provision.
Services should be both accessible and child-friendly.
Services should promote and protect the rights of children and families, and be advocates for their needs.
Services should be well co-ordinated, with continuity over time between the agencies/services involved.
Services should be delivered as close to home as resources and expertise allow.
Services should be evaluated regularly, to ensure they are meeting the evolving needs of the child population.
Services should work within the available resources, taking account of financial, political, and environmental factors.
Different organisations should seek to influence each other in a positive way, to produce the best possible overall service.

The child-friendly health care initiative

The Child Friendly Health Care Initiative is an example of a project, by a group of agencies, which has incorporated The United Nations Convention on the Rights of The Child. These organizations are Child Advocacy International, the Royal College of Nursing, the Royal College of Paediatrics and Child Health and UNICEF (UK), with technical support from the Child and Adolescent Health Department of WHO in Geneva, and UNICEF in New York. The Child Friendly Health Care Initiative has 12 standards (see below), and for each, a number of defining criteria which outline ways of improving health care for children in all health care facilities.

Child friendly health care includes any behaviour, attitude, action, or resource that minimises fear, anxiety, and suffering in children receiving health care, and their families. It must include advocacy and needs to comply with the articles of the United Nations Convention on the Rights of the Child.

Health care workers can practice child friendly health care by acting as advocates for children and families, and by working together to:

Keep children out of hospital, unless it is best for the child (UNCRC articles 9,24,25,3).
Support and give the best possible health care to pregnant women and children (UNCRC articles 2,6,23,24,37).
Give safe care in a secure, clean, child-friendly environment (UNCRC article 3).
Give child-centred care (UNCRC articles 5,9,114,37).
Share information with the child and family, and enable their participation (UNCRC articles 9,12,13,17).
Provide equal care, and treat the child as an individual with rights (UNCRC articles 2,7,8,9,16,23,27,29,37).
Recognise and relieve a child's pain and discomfort (UNCRC articles 19,23,24).
Provide appropriate emergency care (UNCRC articles 6,24).
Enable children to play and learn (UNCRC articles 6,28, 29,31).
Recognise, protect, and support the vulnerable or abused child (UNCRC articles 3,11,19,20,21,25,32 37,39).
Promote and monitor health (UNCRC articles 6,17, 23,24,33).
Support the child's best possible nutrition (UNCRC articles 3,24,26,27).

The supporting criteria for these 12 child-friendly health care standards were developed following wide global consultation with families, health care workers, and organisations involved

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in children's care. They translate the articles of the UNCRC into everyday practice for all health care workers, whatever type of health care they organise or give.

Standard 7 particularly addresses palliative care, which is defined in the Child Friendly Healthcare Initiative as follows: the active total/comprehensive care of a child with an incurable or other life-limiting condition by a multidisciplinary team, to prevent suffering by controlling distressing symptoms, and by providing other general and psychosocial supportive care to the child and family.

The supportive criteria for Standard 7 in the Child Friendly Healthcare Initiative are as follows:

A visible mission statement, written in the relevant languages, that includes a commitment to recognising, assessing, and relieving pain and other distressing symptoms;
A separate pain and other symptom management and palliative care service(s), with lead health professionals and/or multi disciplinary team(s);
Systems of care, guidelines and job aides (for example, tools to relieve pain) to help with symptom recognition, symptom assessment and restraint for procedures;
Written guidelines, evidence-based wherever possible, used by everyone to help with symptom relief, that include advice on the relief of different types of pain and other distressing symptoms, and on how to use non-pharmacological and pharmacological pain relieving strategies in the different age groups;
Material resources including:
- a safe, secure supply of free or affordable essential drugs for symptom relief, that includes opioids and non-opioids;
- distraction toys and other resources to aid nonpharmacological pain and other symptom management;
The use of individual pain (and other symptom) plans made with the children and their parents/carers;
Psychosocial support for children, families, and health workers;
Regular education/training opportunities for health workers on the recognition and management of pain and other distressing symptoms, and on the restraint of children;
Keeping records about use of opioids;
Regular audit of systems, policies, guidelines, and other job aides.

The pilot project for the Child Friendly Healthcare Initiative, undertaken in 4 poorly resourced countries; Uganda, Pakistan, Moldova and Kosovo, found large numbers of children in the participating countries suffering from uncontrolled pain and other distressing symptoms. Although symptom management was better in some countries than others, experiencing these symptoms is still the unfortunate reality for most of the world's children.

Improved technology and potential advances in care do not always protect or improve the treatment of these distressing symptoms, and can, on occasion, be an additional cause. Routine procedures, such as dressing wounds and taking blood, and other health worker actions, were frequent causes of unnecessary pain and suffering for a child.

The CFHI states that effective relief from pain and other distressing symptoms could be better if health workers:

were more aware of the suffering and discomfort that all children, including newborn babies, may experience, due to pain and other distressing symptoms;
always anticipated a child's pain and other distressing symptoms;
gave a higher priority to relieving each individual child's pain and other distressing symptoms;
made greater use of pain and symptom-relieving drugs, both non-opiates and opiates;
understood and used the simple non-pharmaceutical methods that can help (supportive, cognitive, behavioural, and physical);
knew about and anticipated all the things that can make the experience of pain or other symptoms worse.

To make it better , the best practice is for health workers to have core (during initial training) and regular education/training opportunities on the recognition, assessment, and treatment of pain and other distressing symptoms. Best possible practice is also facilitated by having, whenever possible, separate skilled health professionals, who lead and guide the treatment of pain and other symptoms. Having a multidisciplinary team dedicated to symptom relief and other aspects of palliative care, and using standardised guidelines for managing pain and other distressing symptoms, are known to be effective ways of improving care and sharing good practice.

The child's normal health worker, working together with the child and his or her carers, who know the child best, can often reduce pain and other distressing symptoms by:

planning each individual child's care, as each child responds differently to pain and other distressing symptoms;
anticipating pain and taking effective measures, and/or giving drugs before the symptoms occur, for example, before a procedure or operation. Children with recurrent distressing symptoms should not wait for these to re-occur before receiving relief.

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using pain/symptom assessment tools to help them recognise and assess a child's symptoms and guide the care he or she needs;
Giving drugs in a way that does not cause more pain and distress. Drugs are often still given in a way that is painful for the child, for example, by intra muscular injection. During the pilot project, many children told us that they would rather pretend that they had no pain or discomfort, than have the medicine given this way. Health workers need to be aware of this, and also that the drugs are frequently available, and equally effective, as intravenous, subcutaneous, or oral preparations, often at a lower cost;
advocating for the child's needs to be met, if they are unable to meet these needs themselves.

While drugs have an important role to play in the management of pain and other distressing symptoms, there is much that can be done even where drugs are not easily available, to relieve suffering and make an unpleasant experience more bearable, such as:

being honest with the child, and preparing him or her for what might be a painful experience, can help him or her to cope. Anxiety and mistrust of health workers will make the experience worse;
using appropriate play, stimulation, and distraction to help in the management of pain and other symptoms;
using heat, cold, touch, and other comfort measures, as these can sometimes help the distress of pain and other symptoms;
giving psychological support, simple kindness, and involving parents and other familiar carers where possible.

The CFHI states that it is ethically wrong, and a failure in performance of a health professional's duty, for a child to suffer from uncontrolled pain or other distressing symptoms. This is particularly the case for a child who has a permanent disability that is associated with chronic symptoms, or one who cannot be cured of his or her illness, and may be near the end of his or her life. Relieving pain and distressing symptoms is not always about cure, but is about making the experience of living now more bearable, and so, improving the quality of remaining life.

Access and use of appropriate medications

Control of most symptoms does not require expensive intervention, merely recognition and access to first-line treatments. Continuing powerful advocacy from international organizations, such as WHO, palliative care networks, medical professionals, and the public is needed to educate and encourage governments in the context of their responsibilities to establish national palliative care strategies, and to address the procurement, legislation, and administration processes needed to enable the essential drugs to be used.

WHO recommends that countries should establish an essential palliative care drug list based on the medical needs of their particular population. The WHO Expert Committee on the Use of Essential Drugs has recommended that drugs mentioned in the WHO publication Cancer Pain Relief: with a Guide to Opioid Availability [74], be considered essential.

Encouraging active use of available guidelines

A variety of educational materials and practical guidelines are available, which could be used much more extensively. Some examples include:

The WHO cancer unit has, since the early 1980's, made major attempts to advocate for pain relief and opioid availability worldwide, in both rich and poor countries. They have produced a number of relevant publications, in particular, Cancer pain relief and palliative care in children [75].

Here is a quote from their web site on this publication:

Almost all children with cancer will experience pain as a direct result of the disease, as a side-effect of treatments or invasive clinical procedures, or as an aspect of psychological distress. In more than 70% of cases, that pain will at some stage become severe. Although means to relieve pain are widely available, in developed and developing countries alike, their use in children has often been very limited. Fears of drug addiction , lack of knowledge of children's perception of pain and illness, use of inappropriate drug doses, and failure to understand the value of supportive, non-drug measures have all contributed to widespread inadequacy in the control of pain in children with cancer.
WHO provides some excellent general guidelines on opioid and other drug requirements for palliative care in the following publication: Cancer pain relief: with guide to opioid availability [74]. '

Here is a summary:

This second edition of the WHO guidelines for cancer pain relief presents a simple and practical method to relieve the pain syndromes unique to cancer. After a brief explanation of the physiological and psychological causes of cancer pain
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Part 1 presents a 9-stepprocedure for pain assessment, including questions clinicians should ask. The most extensive section details how to select and prescribe opioid and nonopioid analgesics, drugs for neuropathic pain, and adjuvant drugs for the treatment of side effects, the enhancement of pain relief, and the management of psychological disturbances. Part 2 describes the international system by which morphine and other opioids are made available for medical purposes. It concludes with the criteria that can be used to regulate the dispensing of opioids by physicians, nurses and pharmacists.
Child Advocacy International has produced a practical guide to managing common symptoms at the end of life [61].
WHO, in collaboration with the International Association for the Study of Pain (IASP), has published a power-point presentation entitled Cancer pain relief and palliative care in children on their website.

Education of healthcare professionals

Doctors, nurses, and all members of the multidisciplinary teams involved in providing palliative care can be helped by exposure to existing, well-worked-out local strategies. Paediatric palliative care still needs a critical mass of trainers and practitioners, both to provide the service, and also to train others. A combination of approaches will be needed. Some top down training will be needed for people who are already experienced practitioners in their own field, but need to expand their knowledge, experience, and practice in all aspects of palliative care. In addition bottom up teaching will be needed in the long run, both to train those who will become palliative care practitioners, and to broaden the awareness of all in health care.

One of the most effective ways will be to introduce palliative care into medical, nursing and multi-professional training schools. Palliative care needs to be on the curriculum not only in its own right, but also as a pervasive underlying factor, so that whenever any subject is taught, the palliative care aspects of the treatment plan are considered. Those responsible for setting standards of training need to ensure that parts of the examination syllabus include modules on pain control and palliative care, and that the examinations reflect these modules.

Apart from national and international conferences, some innovative approaches have been undertaken offering training, for example, sponsored places for practitioners in Eastern Europe at the European Paediatric Palliative Care Courses, and individually tailored training programmes with sponsored places established in Poland [31]. Further, a oneday training programme on pain and control and palliative care was conducted in Uganda in 2001, involving lectures, skill stations, scenarios, and an MCQ test, followed by certification for those who passed. This kind of training might be usefully employed to help team building and practice in the care of children in hospital, and could equally be adapted to include the approaches to be taken in children's homes in other developing countries.

Conclusion

Children's palliative care is a relatively new and emerging specialist with great potential for helping children and families living with life-threatening illnesses in all parts of the world. A range of models of care has been established, particularly in the resource rich countries, but there are also excellent models in some of the less wealthy, and even the very poor, counties. However, the overall picture is still one of immaturity, with unequal services, a lack of evidence base and considerable scope for development.

Broader awareness of the values and philosophy of palliative care, and also of its place in society in relation to children, is needed. It can be a difficult and very gradual process to alter a society's views, especially when some of these are deeply embedded in cultural norms, and rooted in people's own subconscious fears of death. Factual information about the potential benefits of palliative care, about pain relief, and opioids needs to be widely available for the general public, to raise expectations and demands of local health care systems.

Those of us working in paediatric palliative care need to work closely alongside the respected and influential adult palliative care organisations already working across the world, highlighting the special needs of children. As paediatric palliative care increases in size, we will need to enhance the international roles of our own organizations, such as ACT and CHI, and develop more extensive and effective paediatric networks.

Acknowledgements

I am enormously grateful to the many colleagues who have helped inform me with this chapter, with inputs from their experience and services. Thanks to John Collins, Jenny Hynson, and Susan Trethewie in Australia; Sonia Develter in Belgium; Anna Gorchakova in Belarus; Gerri Frager and Hal Siden in Canada; Lisbeth Quesada Tristan in Costa Rica; Stefan Friedrichsdorff and Carla Hassan in Germany; Maria

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Bouri and Danai Papadatou in Greece; Florence Chu, Molin Lin and Rosita Lie in Hong Kong; Gudmundur Jonmundsson in Iceland; Maeve O'Reilly and Fiona O'Laughlin in Ireland; Anda Jansone in Latvia; Ross Drake and Adrian Trenholmein New Zealand; Ingeborg Storm Mathisen, Steinunn Egeland and Lise Lotte Hoel in Norway; Tomasz Dangel in Poland; Kirsteen Cowling and Nicoletta Grecu in Romania; Marina Bialik in Russia; Maria Jasenkova in Slovakia; Debbie Norval and Joan Marston in South Africa; Gustav Ljungman in Sweden; Eva Bergstrasser in Switzerland.