Commentary
Transforming children’s palliative care through the International Children’s Palliative Care Network Julia Downing, Sue Boucher, Busi Nkosi, Barbara Steel, Joan Marston
© 2014 MA Healthcare Ltd
‘T
ransforming children’s palliative care ... from ideas to action’ was the theme of the first International Children’s Palliative Care Network (ICPCN) conference on children’s palliative care (CPC), held in Mumbai in February 2014. The theme recognised the progress in the development of CPC around the world in the past 10–20 years, while acknowledging that there is still a long way to go to ensure that all children who need palliative care services have access to them. A recent study estimated the need for CPC in Kenya, South Africa, and Zimbabwe at between 120 and 181 children per 10 000, and that fewer than 5% of children needing specialised palliative care were receiving it (Connor and Sisimayi, 2013). Thus, although much has been done in the development of CPC, there is still more to be done. Key to the scaling up of services around the world will be learning from each other and putting ideas into practice. The ICPCN was founded in 2005 with a vision that every child around the world who needs CPC will have access to quality palliative care services. Underpinning the development of the ICPCN was the belief that all children with lifelimiting and life-threatening conditions have the right to quality palliative care, and a realisation that CPC has often lagged behind adult palliative care with regards to service provision and education (Marston et al, 2013). The ICPCN (Marston et al, 2013; www.icpcn.org) believes that: ●●CPC is a basic human right ●●Children and young people with life-limiting conditions have very specific palliative care needs that are often different to those of adults ●●If these children and young people’s physical, emotional, social, spiritual, and developmental needs are to be met, then the carers require specialist knowledge and skills, and children have the right to quality palliative care provided by trained health practitioners ●●The voice of children and young people should be heard, respected, and acknowledged as part of the expression of palliative care worldwide.
International Journal of Palliative Nursing 2014, Vol 20, No 3
Collaboration is key, and the network seeks to bring together like-minded individuals and organisations from around the world to share with and learn from each other. The public health approach to palliative care proposes four foundation measures for service provision: drug availability, policy, education, and implementation (Stjernswärd et al, 2007). A fifth foundation measure—research—has also been proposed (Harding et al, 2013). Linked to this, and in order to transform CPC, the ICPCN identified five strategic areas that will affect care provision and help change ideas to actions: information sharing, networking, advocacy, education, and research. The ICPCN is also involved in various projects to recognise core components of successful service delivery, e.g. the Beacon Centre Project (Downing et al, 2013); a project in Maharashtra and Malawi funded by the UK Department for International Development; and a study with the Foundation for Hospices in Sub-Saharan Africa to identify key elements of, and lessons learnt from, successful CPC programmes.
Information, networking, and the history of children’s palliative care The modern adult palliative care movement began in 1967 with Dame Cicely Saunders and St Christopher’s Hospice in London, but it was not until 15 years later that Sister Frances Dominica conceived of a hospice where children with life-threatening and life-limiting illnesses could be cared for. Sister Frances established Helen House, the first children’s hospice, in Oxfordshire, England, in 1982. In 1983, Children’s Hospice International (CHI) was founded in the US by Ann Armstrong-Dailey, who found that, of the 1400 hospices in the country, only four were willing to accept children into their programmes. CHI aimed to promote the provision of paediatric care, the inclusion of children in existing hospice programmes, and the inclusion of palliative care
Julia Downing is Education and Research Consultant, Sue Boucher is International Information Officer, Busi Nkosi is International Advocacy Officer, Barbara Steel is Administration and Finance Officer, and Joan Marston is Chief Executive, International Children’s Palliative Care Network (ICPCN) Correspondence to: Julia Downing Julia.downing792@ btinternet.com
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Commentary
perspectives in all areas of paediatric care, education, and the public arena. As information about these services slowly spread, new services and localised programmes with similar objectives began to emerge in different parts of the world. Some significant developments over these early years included the opening of hospital-based CPC services in St Mary’s Hospital in New York in 1985 and in Great Ormond Street Hospital for children in London the following year. Countries that followed in fairly quick succession with the provision of localised services between 1988 and 1999 included Argentina, Belarus, Poland, Canada, South Africa, Australia, Germany, and New Zealand. Of significance was the development of the World Health Organization (WHO) definition for CPC in 1998 (revised in WHO, 2002), providing the discipline with increased credibility in the health-care world. Figure 1 provides an estimated map of services around the world in 1999. By 2003, more countries had begun to provide localised services, including Zimbabwe, Uganda, Italy, France, Israel, Romania, Costa Rica, and India. In 2005, the idea to form a global organisation to expedite and streamline the sharing of information and provide international networking opportunities came to fruition. This idea was also fuelled by the desire of the founders to share good practice and expertise and to develop a ‘one-stop shop’ for CPC information. The launch of the ICPCN website in 2007 brought the organisation a giant step closer to its stated mission. At this stage, limited information
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was available on the global provision of CPC services. Although the steering group of the ICPCN was aware of enormous gaps in the provision of services, even in countries where CPC was available, it could not accurately pinpoint where all the active programmes were to be found, nor describe the nature of this service provision. The steady growth of ICPCN membership, the development of a directory of services, research, and purposeful networking have now allowed the organisation to build a far clearer picture of CPC service provision around the world (Figure 2). Using its own resources and networks and with reference to mapping projects such as the European Association of Palliative Care’s Atlas of Palliative Care in Europe (Centeno et al, 2013), The Status of Paediatric Palliative Care in SubSaharan Africa: An Appraisal (Harding et al, 2010), Pediatric Palliative Care Provision Around the World: A Systematic Review (Knapp et al, 2011) and Pediatric Palliative Care: Global Perspectives (Knapp et al, 2012), the ICPCN is able to provide a far clearer picture of where CPC programmes are located and the overall level of service provision in each country. This not only has the advantage of providing and promoting networking opportunities between health professionals and organisations, it also provides useful information to parents, funders, and policy-makers. Now that we are well into the third decade of the CPC movement, it has been rewarding to record the relatively recent surge in the development of services around the world, as more people come to realise the need for this specialised care. However, it would be unwise for us to stop
© 2014 MA Healthcare Ltd
Figure 1. Estimated map of children’s palliative care services in 1999. White indicates no known provision, lightest green indicates evidence of capacity-building activities, and medium green indicates evidence of localised provision and that training is available. Source: ICPCN
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Commentary
© 2014 MA Healthcare Ltd
Figure 2. Estimated mapping of children’s palliative care (CPC) services in 2013. Lighter green is as in Figure 1; dark green indicates broad provision with training available and focused plans for development of services and integration into health-care services; and darkest green indicates provision is approaching full integration and a national policy supporting CPC is in place. Source: ICPCN pushing for further development and support for these services for even the briefest of moments. Most countries still have very localised services, making accessing programmes a great and often impossible challenge. In addition, the ICPCN is haunted by the large patches of white (indicating no services) across the central and west coasts of Africa and South America. Within the borders of the countries in these regions live some of the poorest and most vulnerable children, millions of whom would derive incalculable benefit from access to even the most basic of CPC services, such as the control of severe and persisting pain and the management of distressing symptoms. The ICPCN works hard to fulfil its mission to provide the most current and relevant information to the world at large, to its members, and to those who have the capacity to promote and improve service provision. By highlighting successes, describing best practice, and sharing information on the most recent publications and research in the field, the ICPCN attempts to keep the need for CPC in the minds and on the agendas of funders, international bodies, government institutions, and like-minded non-profit organisations with whom it can partner to achieve common goals. The main conduits for this information are the ICPCN newsletters, its website, and social media sites such as Facebook and Twitter. Informationsharing through these channels allows those working in CPC—a relatively small number of professionals—to feel part of a much larger global community.
International Journal of Palliative Nursing 2014, Vol 20, No 3
CPC encourages participation in dialogue from a wide range of professionals and family members in the global community. All members of the multidisciplinary team are encouraged to participate in communication and to offer support and assistance when asked. This is regularly achieved through PaedPalCare, a forum managed and moderated by the UK charity, Together for Short Lives (www.togetherforshortlives.org.uk/professionals/ care_provision/care_forum). Discussions are wide-ranging and cover topics such as pain and symptom management, treatment approaches, drug doses and routes, and ethical issues, such as withdrawing life-sustaining treatment. An additional source of information on global issues of importance in the field, as well as related news and reviews, is the international children’s edition of the ehospice website (www.ehospice.com/internationalchildrens/en-gb/ home.aspx). This edition, edited and managed by the ICPCN, provides a comprehensive platform to disseminate information to a worldwide audience. It provides readers with the latest news on programmes, innovations, children’s stories, best practice, and research and allows followers to sign up to receive alerts every time a story or article is added to the site.
Advocacy, drug availability, and policy CPC is a fairly new concept and is still not well understood or well known in many countries, particularly in the developing world. Even where awareness exists, political will and
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resources to develop CPC services are often lacking. In the meantime, children continue to suffer and die in agony. It is difficult to quantify the number of children who would benefit from palliative care worldwide. Estimates vary from 7 to 20 million, with examples of country-specific estimates including 32 children in every 10 000 in England (Fraser et al, 2012) and 181 in every 10 000 in Zimbabwe (Connor and Sisimayi, 2013). Finding accurate numbers is made difficult by the lack of clear information on populations, levels of access to preventative and curative services, and which children need palliative care, as well as the unpredictability of disease trajectories (Downing and Marston, 2013). However, in 2012, an estimated 3.2 million children under 15 years of age were living with HIV/AIDS globally, with antiretroviral therapy coverage limited to around 28% (UNAIDS, 2013). Of the 200 000 children who develop cancer worldwide annually, barely 20% have access to diagnosis and care. Consequently, a large number of children die each year undiagnosed or untreated, and most receive no relief of their symptoms (International Network for Cancer Treatment and Research, 2013). The ICPCN has a key role in advocating for CPC in different forums. In different countries it aims to work with local champions to advocate for CPC with governments, for example in Swaziland, where it has held meetings with the government and supported training on pain assessment and management. At the regional and international level, the ICPCN is involved in raising awareness of the need for the development of policy and the inclusion of CPC in children’s health programmes, alongside WHO, Unicef, the US Agency for International Development, and other multilateral organisations such as the Elizabeth Glaser Pediatric AIDS Foundation and World Vision. The goal of CPC is to relieve suffering and improve quality of life. Relief of suffering is a basic human right (Gwyther et al, 2009), and various agencies of the United Nations have called for the inclusion of palliative care in caring for people with chronic and life-limiting illnesses. The Human Rights Council (2009:23) stated that ‘the de facto denial of access to pain relief, if it causes severe pain and suffering, constitutes cruel, inhuman or degrading treatment or punishment’. WHO estimated that every year tens of millions of people suffer from moderate to severe pain and eventual death without adequate access to pain medication. This includes 5.5 million people with cancer, 1 million people with endstage HIV, along with children and adults with
chronic illnesses (WHO, 2011a). The WHO Global Action Plan for the Prevention and Control of Non-Communicable Diseases (NCDs) calls for integration of palliative care and pain relief into the continuum of care for people with NCDs. In 2011, WHO released guidance for the availability and accessibility of controlled substances to help countries ensure a balance between drug availability for medical purposes and prevention of abuse. The ICPCN therefore calls on countries to: ●●Remove unnecessary restrictive policies that limit children’s access to pain relief (opioids) ●● Ensure education and training of health-care workers in pain assessment and management in children ●● Ensure availability of opioids to all who need them. The ICPCN takes every opportunity to promote a global voice for CPC and to advocate for the rights of children to receive palliative care, including end-of-life care, worldwide. The ICPCN charter, first developed in October 2008, outlines the rights of children with life-limiting illnesses and their families; it also serves as a guide to service providers. It is available in 22 languages from the ICPCN website (www.icpcn. org/icpcn-charter/) and is a powerful advocacy tool. In recent years, the issue of perinatal and neonatal palliative care has been an important one. Discussions are ongoing with key international organisations around the need for palliative care in this area, with arguments being given on either side as to the need for and benefits of palliative care in the perinatal and neonatal periods. This is an area about which the ICPCN feels strongly and for which it continues to advocate.
Education and research Education is an essential component of the development of CPC (Downing and Ling, 2012), as illustrated by its inclusion as one of the foundation measures of the public health approach (Stjernswärd et al, 2007). Education is not a one-off event, but should be ongoing. This is particularly important for an area such as CPC, which is relatively new to many people and therefore requires reinforcement of knowledge and skills. However, CPC education and training are not always available to those who need them. There are numerous challenges to the provision of training, such as the accessibility and affordability of courses, the number of people requiring training and their geographical diversity, the appropriateness of the courses being taught, a lack of experienced personnel and placement
© 2014 MA Healthcare Ltd
❛The ICPCN was founded in 2005 with a vision that every child around the world who needs palliative care will have access to quality services.❜
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Commentary
sites, and the cost of providing or attending courses (Downing and Ling, 2012). The ICPCN believes that education is the foundation for the development of CPC globally. In order to provide good quality services and to ensure that health professionals and carers are fit for practice, education must be available, affordable, and appropriate for the setting. Therefore the ICPCN undertook an online survey aimed at identifying some of the training needs that can help shape future training programmes on CPC. The questionnaire was completed by 248 participants from 54 countries. Respondents were asked to rate their CPC training needs on a scale of 1 to 5. The top five priorities across all respondents were: psychological aspects of CPC; medications; setting up and managing services; pain assessment and management; and communication with children. Nurses also prioritised managing acute distressing terminal events, and doctors prioritised neurological symptom assessment and management. Understanding training needs has helped to shape the development of the ICPCN’s strategy for CPC education. The ICPCN recognises the need for a variety of different training formats, such as face-to-face taught programmes, blended training, computerand web-based training, and clinical application. A variety of types of programmes is required to increase the accessibility and availability of training without duplication. One example of the ICPCN’s work in this area is the development of an e-learning programme (www.elearnicpcn.org). An initial pilot programme was undertaken, based around the new WHO (2011b) guidelines on persisting pain for children. The pilot was accessed by 186 people from over 25 countries and demonstrated the viability of e-learning in the CPC field. In September 2013, the ICPCN launched a virtual learning environment, with short courses on CPC, pain assessment and management, communicating with children, emotional issues, child development and play, end-of-life care, and grief and bereavement. Courses are available in English and are gradually being translated into French, Portuguese, Serbian, Russian, Spanish, Mandarin, Dutch, and Arabic. Discussions for accrediting the courses are ongoing and the ICPCN is also looking at the possibility of collaborating with Mildmay Uganda to run its Diploma in CPC through this e-learning platform. The ICPCN is keen to collaborate with others working in the field, including EPEC Pediatrics and Together for Short Lives. The ICPCN also recognises the urgent need to develop the evidence base for CPC globally, and in particular in resource-limited settings. Although
International Journal of Palliative Nursing 2014, Vol 20, No 3
the volume of palliative care research has increased significantly in the past decade, there has not been a proportional increase in countries where the burden of disease is highest. Thus, the International Association for Hospice and Palliative Care’s (2007) Declaration of Venice called for an increase in palliative care research in low-resource settings through collaboration. Through multinational and professional taskforces, the ICPCN has undertaken various studies linked to the need for advocacy, and it continues to collaborate with others to develop the evidence base. One study used a Delphi process to establish priorities for global research in CPC and identified 26 areas. Top priorities included children’s understanding of death and dying, managing pain when there is no morphine, funding for and the cost of CPC, training needs for CPC, and assessment of the WHO two-step analgesic ladder for pain management in children. This study is being written up for publication and will inform ongoing research.
❛Education is not a one-off event, but should be ongoing, and this is particularly important for an area such as children’s palliative care.❜
Transforming children’s palliative care: a case study Developing CPC requires a multifaceted approach that includes education, mentorship, material development, and advocacy. A project to expand palliative care to children in the Maharashtra region of India and in Malawi was implemented in 2010 by Help the Hospices, the ICPCN, the Indian Association of Palliative Care, and the Palliative Care Association of Malawi. It was funded by the UK Department for International Development. Maharashtra and Malawi each had an existing, successful CPC programme that could be used as a model and mentor for further development. In Maharashtra, this was provided by the Palliative Care Department of Tata Memorial Centre, a cancer hospital, and in Malawi by Umodzi, a non-governmental organisation in the paediatric department of Queen Elizabeth II Central Hospital in Blantyre. In Malawi, a decision was taken to develop CPC in all of the central referral hospitals in the country, and in Maharashtra a variety of different types of programmes were identified for development. Advocacy meetings were set up with relevant hospital directors, government officials, and paediatric, HIV, and cancer organisations. In Malawi, the hospitals selected were Kamuzu Central Hospital in Lilongwe (central Malawi), Mzuzu Central Hospital in the north, and Zomba Central Hospital in the south, ensuring coverage of the whole country. As Maharashtra is considerably larger than Malawi, the Maharashtra team decided to select
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different models of health care. The project started with Sion Hospital’s Centre of Excellence for Anti-retroviral therapy, followed by Jawhar Rural Health Service hospital, which is in a rural setting and is linked to four primary health-care centres, as well as a large group of accredited social health activist workers in the community. This initiative has been supported financially by the National Rural Health Mission of Maharashtra. The final hospital to be included was the Mahatma Ghandi Mission Hospital in Navi Mumbai, which sees a variety of patients and includes a rural outreach programme. Ongoing education and mentorship are provided to professionals, volunteers, community caregivers (Malawi), and accredited social health activist workers (India), and six new CPC programmes have been set up in the two countries. Advocacy with central government has led to CPC inclusion in draft national policy in both countries, in the undergraduate curricula of doctors and nurses in Malawi, and in the Maharashtran regional policy and budget of the National Rural Health Mission in India. An important element of the project has been the inclusion of the voices of children and families in all activities, including advocacy with government. To date, the project has resulted in 940 children receiving palliative care, 170 children receiving oral morphine, and 128 professionals becoming competent to provide CPC across the two countries. Essential to the success of the project have been: effective and committed coordinators; strong model programmes providing mentorship; support from national associations, the ICPCN, and Help the Hospices; and funding for a 5-year period to provide time for strategic development.
Conclusion The strength of the ICPCN lies in the collaborative effort of its members and in their passion for the care of children. The 2009 ICPCN Declaration of Cape Town stated: ‘As a community of palliative care practitioners, we recognise that disparities exist within and between countries and services, but collectively we are a rich resource of knowledge, skills and judgement; and we commit to share all that we can to achieve this joint vision, and both individually and collectively to identify and advocate for opportunities for collaboration.’ (Marston et al, 2013)
Therefore the ICPCN has had a role, and continues to have one, in the transformation of palliative care for children around the world. I● JPN
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Declaration of interests This work had no external sources of funding. The authors have no conflicts of interest to declare. Centeno C, Lynch T, Donea O, Rocafort J, Clark D (2013) EAPC Atlas of Palliative Care in Europe 2013. EAPC, Italy Connor SR, Sisimayi C (2013) Assessment of the Need for Palliative Care for Children. Three Country Report: South Africa, Kenya and Zimbabwe. UNICEF, ICPCN, London Downing J, Ling J (2012) Education in children’s palliative care across Europe and internationally. Int Palliat Nurs 18(3): 115–20 Downing J, Marston J (2013) Commentary on children’s palliative care. Ann Palliat Med 2(2): 105–7. doi: 10.3978/j.issn.2224-5820.2013.04.07. Downing JD, Marston J, Selwyn C, Ross-Gakava L (2013) Developing children’s palliative care in Africa through beacon centres: lessons learnt. BMC Palliat Care 12: 8. doi: 10.1186/1472-684X-12-8. Fraser LK, Miller M, Hain R et al (2012) Rising national prevalence of life-limiting conditions in children in England. Pediatrics 129(4): e923–9. doi: 10.1542/ peds.2011-2846. Gwyther L, Brennan F, Harding R (2009) Advancing palliative care as a human right. J Pain Symptom Manage 38(5): 767–74. doi: 10.1016/j.jpainsymman.2009.03.003. Harding R, Sherr L, Albertyn R (2010) The Status of Paediatric Palliative Care in Sub-Saharan Africa: An Appraisal. Diana Princess of Wales Memorial Fund, Kings College London Harding R, Selman L, Powell RA et al (2013) Research into palliative care in sub-Saharan Africa. Lancet Oncol 14(4): e183–8. doi: 10.1016/S1470-2045(12)70396-0. Human Rights Council (2009) Promotion and protection of all human rights, civil, political, economic, social and cultural rights, including the right to development. www2. ohchr.org/english/bodies/hrcouncil/docs/10session/A. HRC.10.44AEV.pdf (accessed 27 February 2013) International Association of Hospice and Palliative Care (2007) The Declaration of Venice: palliative care research in developing countries. J Pain Palliat Care Pharmacother 21(1): 31–3 International Network for Cancer Treatment and Research (2013) Cancer Control 2013: Cancer Care in Emerging Health Systems. Global Health Dynamics. INCTR, Belgium Knapp C, Woodworth L, Wright M et al (2011) Pediatric palliative care provision around the world: a systematic review. Pediatr Blood Cancer 57(3): 361–8. doi: 10.1002/ pbc.23100. Knapp C, Madden V, Fowler-Kerry S (eds) (2012) Pediatric Palliative Care: Global Perspectives. Springer, New York Marston J, Boucher S, Downing J, Nkosi B, Steel B (2013) International Children’s Palliative Care Network: working together to stop children suffering. Eur J Palliat Care 20(6): 308–10 Stjernswärd J, Foley KM, Ferris FD (2007) The public health strategy for palliative care. J Pain Symptom Manage 33(5): 486–93 UNAIDS (2013) Global Report. UNAIDS Report on the Global AIDS Epidemic 2013. UNAIDS, Geneva World Health Organization (2002) Definition of children’s palliative care. www.who.int/cancer/palliative/en/ (accessed 27 February 2014) World Health Organization (2011a) Guidelines Ensuring Balance in National Policies on Controlled Substances, Guidance for Availability and Accessibility for Controlled Medicines. WHO, Geneva World Health Organization (2011b) WHO Guidelines on the Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses. WHO, Geneva
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❛Through multinational and professional taskforces the ICPCN has undertaken various studies linked to the need for advocacy, and it continues to collaborate with others to develop the evidence base.❜
International Journal of Palliative Nursing 2014, Vol 20, No 3
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 147.008.031.043 on December 7, 2015. For personal use only. No other uses without permission. . All rights re
Transforming children’s palliative care through the International Children’s Palliative Care Network Julia Downing, Sue Boucher, Busi Nkosi, Barbara Steel, Joan Marston
© 2014 MA Healthcare Ltd
‘T
ransforming children’s palliative care ... from ideas to action’ was the theme of the first International Children’s Palliative Care Network (ICPCN) conference on children’s palliative care (CPC), held in Mumbai in February 2014. The theme recognised the progress in the development of CPC around the world in the past 10–20 years, while acknowledging that there is still a long way to go to ensure that all children who need palliative care services have access to them. A recent study estimated the need for CPC in Kenya, South Africa, and Zimbabwe at between 120 and 181 children per 10 000, and that fewer than 5% of children needing specialised palliative care were receiving it (Connor and Sisimayi, 2013). Thus, although much has been done in the development of CPC, there is still more to be done. Key to the scaling up of services around the world will be learning from each other and putting ideas into practice. The ICPCN was founded in 2005 with a vision that every child around the world who needs CPC will have access to quality palliative care services. Underpinning the development of the ICPCN was the belief that all children with lifelimiting and life-threatening conditions have the right to quality palliative care, and a realisation that CPC has often lagged behind adult palliative care with regards to service provision and education (Marston et al, 2013). The ICPCN (Marston et al, 2013; www.icpcn.org) believes that: ●●CPC is a basic human right ●●Children and young people with life-limiting conditions have very specific palliative care needs that are often different to those of adults ●●If these children and young people’s physical, emotional, social, spiritual, and developmental needs are to be met, then the carers require specialist knowledge and skills, and children have the right to quality palliative care provided by trained health practitioners ●●The voice of children and young people should be heard, respected, and acknowledged as part of the expression of palliative care worldwide.
International Journal of Palliative Nursing 2014, Vol 20, No 3
Collaboration is key, and the network seeks to bring together like-minded individuals and organisations from around the world to share with and learn from each other. The public health approach to palliative care proposes four foundation measures for service provision: drug availability, policy, education, and implementation (Stjernswärd et al, 2007). A fifth foundation measure—research—has also been proposed (Harding et al, 2013). Linked to this, and in order to transform CPC, the ICPCN identified five strategic areas that will affect care provision and help change ideas to actions: information sharing, networking, advocacy, education, and research. The ICPCN is also involved in various projects to recognise core components of successful service delivery, e.g. the Beacon Centre Project (Downing et al, 2013); a project in Maharashtra and Malawi funded by the UK Department for International Development; and a study with the Foundation for Hospices in Sub-Saharan Africa to identify key elements of, and lessons learnt from, successful CPC programmes.
Information, networking, and the history of children’s palliative care The modern adult palliative care movement began in 1967 with Dame Cicely Saunders and St Christopher’s Hospice in London, but it was not until 15 years later that Sister Frances Dominica conceived of a hospice where children with life-threatening and life-limiting illnesses could be cared for. Sister Frances established Helen House, the first children’s hospice, in Oxfordshire, England, in 1982. In 1983, Children’s Hospice International (CHI) was founded in the US by Ann Armstrong-Dailey, who found that, of the 1400 hospices in the country, only four were willing to accept children into their programmes. CHI aimed to promote the provision of paediatric care, the inclusion of children in existing hospice programmes, and the inclusion of palliative care
Julia Downing is Education and Research Consultant, Sue Boucher is International Information Officer, Busi Nkosi is International Advocacy Officer, Barbara Steel is Administration and Finance Officer, and Joan Marston is Chief Executive, International Children’s Palliative Care Network (ICPCN) Correspondence to: Julia Downing Julia.downing792@ btinternet.com
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Commentary
perspectives in all areas of paediatric care, education, and the public arena. As information about these services slowly spread, new services and localised programmes with similar objectives began to emerge in different parts of the world. Some significant developments over these early years included the opening of hospital-based CPC services in St Mary’s Hospital in New York in 1985 and in Great Ormond Street Hospital for children in London the following year. Countries that followed in fairly quick succession with the provision of localised services between 1988 and 1999 included Argentina, Belarus, Poland, Canada, South Africa, Australia, Germany, and New Zealand. Of significance was the development of the World Health Organization (WHO) definition for CPC in 1998 (revised in WHO, 2002), providing the discipline with increased credibility in the health-care world. Figure 1 provides an estimated map of services around the world in 1999. By 2003, more countries had begun to provide localised services, including Zimbabwe, Uganda, Italy, France, Israel, Romania, Costa Rica, and India. In 2005, the idea to form a global organisation to expedite and streamline the sharing of information and provide international networking opportunities came to fruition. This idea was also fuelled by the desire of the founders to share good practice and expertise and to develop a ‘one-stop shop’ for CPC information. The launch of the ICPCN website in 2007 brought the organisation a giant step closer to its stated mission. At this stage, limited information
110
was available on the global provision of CPC services. Although the steering group of the ICPCN was aware of enormous gaps in the provision of services, even in countries where CPC was available, it could not accurately pinpoint where all the active programmes were to be found, nor describe the nature of this service provision. The steady growth of ICPCN membership, the development of a directory of services, research, and purposeful networking have now allowed the organisation to build a far clearer picture of CPC service provision around the world (Figure 2). Using its own resources and networks and with reference to mapping projects such as the European Association of Palliative Care’s Atlas of Palliative Care in Europe (Centeno et al, 2013), The Status of Paediatric Palliative Care in SubSaharan Africa: An Appraisal (Harding et al, 2010), Pediatric Palliative Care Provision Around the World: A Systematic Review (Knapp et al, 2011) and Pediatric Palliative Care: Global Perspectives (Knapp et al, 2012), the ICPCN is able to provide a far clearer picture of where CPC programmes are located and the overall level of service provision in each country. This not only has the advantage of providing and promoting networking opportunities between health professionals and organisations, it also provides useful information to parents, funders, and policy-makers. Now that we are well into the third decade of the CPC movement, it has been rewarding to record the relatively recent surge in the development of services around the world, as more people come to realise the need for this specialised care. However, it would be unwise for us to stop
© 2014 MA Healthcare Ltd
Figure 1. Estimated map of children’s palliative care services in 1999. White indicates no known provision, lightest green indicates evidence of capacity-building activities, and medium green indicates evidence of localised provision and that training is available. Source: ICPCN
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Commentary
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Figure 2. Estimated mapping of children’s palliative care (CPC) services in 2013. Lighter green is as in Figure 1; dark green indicates broad provision with training available and focused plans for development of services and integration into health-care services; and darkest green indicates provision is approaching full integration and a national policy supporting CPC is in place. Source: ICPCN pushing for further development and support for these services for even the briefest of moments. Most countries still have very localised services, making accessing programmes a great and often impossible challenge. In addition, the ICPCN is haunted by the large patches of white (indicating no services) across the central and west coasts of Africa and South America. Within the borders of the countries in these regions live some of the poorest and most vulnerable children, millions of whom would derive incalculable benefit from access to even the most basic of CPC services, such as the control of severe and persisting pain and the management of distressing symptoms. The ICPCN works hard to fulfil its mission to provide the most current and relevant information to the world at large, to its members, and to those who have the capacity to promote and improve service provision. By highlighting successes, describing best practice, and sharing information on the most recent publications and research in the field, the ICPCN attempts to keep the need for CPC in the minds and on the agendas of funders, international bodies, government institutions, and like-minded non-profit organisations with whom it can partner to achieve common goals. The main conduits for this information are the ICPCN newsletters, its website, and social media sites such as Facebook and Twitter. Informationsharing through these channels allows those working in CPC—a relatively small number of professionals—to feel part of a much larger global community.
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CPC encourages participation in dialogue from a wide range of professionals and family members in the global community. All members of the multidisciplinary team are encouraged to participate in communication and to offer support and assistance when asked. This is regularly achieved through PaedPalCare, a forum managed and moderated by the UK charity, Together for Short Lives (www.togetherforshortlives.org.uk/professionals/ care_provision/care_forum). Discussions are wide-ranging and cover topics such as pain and symptom management, treatment approaches, drug doses and routes, and ethical issues, such as withdrawing life-sustaining treatment. An additional source of information on global issues of importance in the field, as well as related news and reviews, is the international children’s edition of the ehospice website (www.ehospice.com/internationalchildrens/en-gb/ home.aspx). This edition, edited and managed by the ICPCN, provides a comprehensive platform to disseminate information to a worldwide audience. It provides readers with the latest news on programmes, innovations, children’s stories, best practice, and research and allows followers to sign up to receive alerts every time a story or article is added to the site.
Advocacy, drug availability, and policy CPC is a fairly new concept and is still not well understood or well known in many countries, particularly in the developing world. Even where awareness exists, political will and
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resources to develop CPC services are often lacking. In the meantime, children continue to suffer and die in agony. It is difficult to quantify the number of children who would benefit from palliative care worldwide. Estimates vary from 7 to 20 million, with examples of country-specific estimates including 32 children in every 10 000 in England (Fraser et al, 2012) and 181 in every 10 000 in Zimbabwe (Connor and Sisimayi, 2013). Finding accurate numbers is made difficult by the lack of clear information on populations, levels of access to preventative and curative services, and which children need palliative care, as well as the unpredictability of disease trajectories (Downing and Marston, 2013). However, in 2012, an estimated 3.2 million children under 15 years of age were living with HIV/AIDS globally, with antiretroviral therapy coverage limited to around 28% (UNAIDS, 2013). Of the 200 000 children who develop cancer worldwide annually, barely 20% have access to diagnosis and care. Consequently, a large number of children die each year undiagnosed or untreated, and most receive no relief of their symptoms (International Network for Cancer Treatment and Research, 2013). The ICPCN has a key role in advocating for CPC in different forums. In different countries it aims to work with local champions to advocate for CPC with governments, for example in Swaziland, where it has held meetings with the government and supported training on pain assessment and management. At the regional and international level, the ICPCN is involved in raising awareness of the need for the development of policy and the inclusion of CPC in children’s health programmes, alongside WHO, Unicef, the US Agency for International Development, and other multilateral organisations such as the Elizabeth Glaser Pediatric AIDS Foundation and World Vision. The goal of CPC is to relieve suffering and improve quality of life. Relief of suffering is a basic human right (Gwyther et al, 2009), and various agencies of the United Nations have called for the inclusion of palliative care in caring for people with chronic and life-limiting illnesses. The Human Rights Council (2009:23) stated that ‘the de facto denial of access to pain relief, if it causes severe pain and suffering, constitutes cruel, inhuman or degrading treatment or punishment’. WHO estimated that every year tens of millions of people suffer from moderate to severe pain and eventual death without adequate access to pain medication. This includes 5.5 million people with cancer, 1 million people with endstage HIV, along with children and adults with
chronic illnesses (WHO, 2011a). The WHO Global Action Plan for the Prevention and Control of Non-Communicable Diseases (NCDs) calls for integration of palliative care and pain relief into the continuum of care for people with NCDs. In 2011, WHO released guidance for the availability and accessibility of controlled substances to help countries ensure a balance between drug availability for medical purposes and prevention of abuse. The ICPCN therefore calls on countries to: ●●Remove unnecessary restrictive policies that limit children’s access to pain relief (opioids) ●● Ensure education and training of health-care workers in pain assessment and management in children ●● Ensure availability of opioids to all who need them. The ICPCN takes every opportunity to promote a global voice for CPC and to advocate for the rights of children to receive palliative care, including end-of-life care, worldwide. The ICPCN charter, first developed in October 2008, outlines the rights of children with life-limiting illnesses and their families; it also serves as a guide to service providers. It is available in 22 languages from the ICPCN website (www.icpcn. org/icpcn-charter/) and is a powerful advocacy tool. In recent years, the issue of perinatal and neonatal palliative care has been an important one. Discussions are ongoing with key international organisations around the need for palliative care in this area, with arguments being given on either side as to the need for and benefits of palliative care in the perinatal and neonatal periods. This is an area about which the ICPCN feels strongly and for which it continues to advocate.
Education and research Education is an essential component of the development of CPC (Downing and Ling, 2012), as illustrated by its inclusion as one of the foundation measures of the public health approach (Stjernswärd et al, 2007). Education is not a one-off event, but should be ongoing. This is particularly important for an area such as CPC, which is relatively new to many people and therefore requires reinforcement of knowledge and skills. However, CPC education and training are not always available to those who need them. There are numerous challenges to the provision of training, such as the accessibility and affordability of courses, the number of people requiring training and their geographical diversity, the appropriateness of the courses being taught, a lack of experienced personnel and placement
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❛The ICPCN was founded in 2005 with a vision that every child around the world who needs palliative care will have access to quality services.❜
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sites, and the cost of providing or attending courses (Downing and Ling, 2012). The ICPCN believes that education is the foundation for the development of CPC globally. In order to provide good quality services and to ensure that health professionals and carers are fit for practice, education must be available, affordable, and appropriate for the setting. Therefore the ICPCN undertook an online survey aimed at identifying some of the training needs that can help shape future training programmes on CPC. The questionnaire was completed by 248 participants from 54 countries. Respondents were asked to rate their CPC training needs on a scale of 1 to 5. The top five priorities across all respondents were: psychological aspects of CPC; medications; setting up and managing services; pain assessment and management; and communication with children. Nurses also prioritised managing acute distressing terminal events, and doctors prioritised neurological symptom assessment and management. Understanding training needs has helped to shape the development of the ICPCN’s strategy for CPC education. The ICPCN recognises the need for a variety of different training formats, such as face-to-face taught programmes, blended training, computerand web-based training, and clinical application. A variety of types of programmes is required to increase the accessibility and availability of training without duplication. One example of the ICPCN’s work in this area is the development of an e-learning programme (www.elearnicpcn.org). An initial pilot programme was undertaken, based around the new WHO (2011b) guidelines on persisting pain for children. The pilot was accessed by 186 people from over 25 countries and demonstrated the viability of e-learning in the CPC field. In September 2013, the ICPCN launched a virtual learning environment, with short courses on CPC, pain assessment and management, communicating with children, emotional issues, child development and play, end-of-life care, and grief and bereavement. Courses are available in English and are gradually being translated into French, Portuguese, Serbian, Russian, Spanish, Mandarin, Dutch, and Arabic. Discussions for accrediting the courses are ongoing and the ICPCN is also looking at the possibility of collaborating with Mildmay Uganda to run its Diploma in CPC through this e-learning platform. The ICPCN is keen to collaborate with others working in the field, including EPEC Pediatrics and Together for Short Lives. The ICPCN also recognises the urgent need to develop the evidence base for CPC globally, and in particular in resource-limited settings. Although
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the volume of palliative care research has increased significantly in the past decade, there has not been a proportional increase in countries where the burden of disease is highest. Thus, the International Association for Hospice and Palliative Care’s (2007) Declaration of Venice called for an increase in palliative care research in low-resource settings through collaboration. Through multinational and professional taskforces, the ICPCN has undertaken various studies linked to the need for advocacy, and it continues to collaborate with others to develop the evidence base. One study used a Delphi process to establish priorities for global research in CPC and identified 26 areas. Top priorities included children’s understanding of death and dying, managing pain when there is no morphine, funding for and the cost of CPC, training needs for CPC, and assessment of the WHO two-step analgesic ladder for pain management in children. This study is being written up for publication and will inform ongoing research.
❛Education is not a one-off event, but should be ongoing, and this is particularly important for an area such as children’s palliative care.❜
Transforming children’s palliative care: a case study Developing CPC requires a multifaceted approach that includes education, mentorship, material development, and advocacy. A project to expand palliative care to children in the Maharashtra region of India and in Malawi was implemented in 2010 by Help the Hospices, the ICPCN, the Indian Association of Palliative Care, and the Palliative Care Association of Malawi. It was funded by the UK Department for International Development. Maharashtra and Malawi each had an existing, successful CPC programme that could be used as a model and mentor for further development. In Maharashtra, this was provided by the Palliative Care Department of Tata Memorial Centre, a cancer hospital, and in Malawi by Umodzi, a non-governmental organisation in the paediatric department of Queen Elizabeth II Central Hospital in Blantyre. In Malawi, a decision was taken to develop CPC in all of the central referral hospitals in the country, and in Maharashtra a variety of different types of programmes were identified for development. Advocacy meetings were set up with relevant hospital directors, government officials, and paediatric, HIV, and cancer organisations. In Malawi, the hospitals selected were Kamuzu Central Hospital in Lilongwe (central Malawi), Mzuzu Central Hospital in the north, and Zomba Central Hospital in the south, ensuring coverage of the whole country. As Maharashtra is considerably larger than Malawi, the Maharashtra team decided to select
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different models of health care. The project started with Sion Hospital’s Centre of Excellence for Anti-retroviral therapy, followed by Jawhar Rural Health Service hospital, which is in a rural setting and is linked to four primary health-care centres, as well as a large group of accredited social health activist workers in the community. This initiative has been supported financially by the National Rural Health Mission of Maharashtra. The final hospital to be included was the Mahatma Ghandi Mission Hospital in Navi Mumbai, which sees a variety of patients and includes a rural outreach programme. Ongoing education and mentorship are provided to professionals, volunteers, community caregivers (Malawi), and accredited social health activist workers (India), and six new CPC programmes have been set up in the two countries. Advocacy with central government has led to CPC inclusion in draft national policy in both countries, in the undergraduate curricula of doctors and nurses in Malawi, and in the Maharashtran regional policy and budget of the National Rural Health Mission in India. An important element of the project has been the inclusion of the voices of children and families in all activities, including advocacy with government. To date, the project has resulted in 940 children receiving palliative care, 170 children receiving oral morphine, and 128 professionals becoming competent to provide CPC across the two countries. Essential to the success of the project have been: effective and committed coordinators; strong model programmes providing mentorship; support from national associations, the ICPCN, and Help the Hospices; and funding for a 5-year period to provide time for strategic development.
Conclusion The strength of the ICPCN lies in the collaborative effort of its members and in their passion for the care of children. The 2009 ICPCN Declaration of Cape Town stated: ‘As a community of palliative care practitioners, we recognise that disparities exist within and between countries and services, but collectively we are a rich resource of knowledge, skills and judgement; and we commit to share all that we can to achieve this joint vision, and both individually and collectively to identify and advocate for opportunities for collaboration.’ (Marston et al, 2013)
Therefore the ICPCN has had a role, and continues to have one, in the transformation of palliative care for children around the world. I● JPN
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Declaration of interests This work had no external sources of funding. The authors have no conflicts of interest to declare. Centeno C, Lynch T, Donea O, Rocafort J, Clark D (2013) EAPC Atlas of Palliative Care in Europe 2013. EAPC, Italy Connor SR, Sisimayi C (2013) Assessment of the Need for Palliative Care for Children. Three Country Report: South Africa, Kenya and Zimbabwe. UNICEF, ICPCN, London Downing J, Ling J (2012) Education in children’s palliative care across Europe and internationally. Int Palliat Nurs 18(3): 115–20 Downing J, Marston J (2013) Commentary on children’s palliative care. Ann Palliat Med 2(2): 105–7. doi: 10.3978/j.issn.2224-5820.2013.04.07. Downing JD, Marston J, Selwyn C, Ross-Gakava L (2013) Developing children’s palliative care in Africa through beacon centres: lessons learnt. BMC Palliat Care 12: 8. doi: 10.1186/1472-684X-12-8. Fraser LK, Miller M, Hain R et al (2012) Rising national prevalence of life-limiting conditions in children in England. Pediatrics 129(4): e923–9. doi: 10.1542/ peds.2011-2846. Gwyther L, Brennan F, Harding R (2009) Advancing palliative care as a human right. J Pain Symptom Manage 38(5): 767–74. doi: 10.1016/j.jpainsymman.2009.03.003. Harding R, Sherr L, Albertyn R (2010) The Status of Paediatric Palliative Care in Sub-Saharan Africa: An Appraisal. Diana Princess of Wales Memorial Fund, Kings College London Harding R, Selman L, Powell RA et al (2013) Research into palliative care in sub-Saharan Africa. Lancet Oncol 14(4): e183–8. doi: 10.1016/S1470-2045(12)70396-0. Human Rights Council (2009) Promotion and protection of all human rights, civil, political, economic, social and cultural rights, including the right to development. www2. ohchr.org/english/bodies/hrcouncil/docs/10session/A. HRC.10.44AEV.pdf (accessed 27 February 2013) International Association of Hospice and Palliative Care (2007) The Declaration of Venice: palliative care research in developing countries. J Pain Palliat Care Pharmacother 21(1): 31–3 International Network for Cancer Treatment and Research (2013) Cancer Control 2013: Cancer Care in Emerging Health Systems. Global Health Dynamics. INCTR, Belgium Knapp C, Woodworth L, Wright M et al (2011) Pediatric palliative care provision around the world: a systematic review. Pediatr Blood Cancer 57(3): 361–8. doi: 10.1002/ pbc.23100. Knapp C, Madden V, Fowler-Kerry S (eds) (2012) Pediatric Palliative Care: Global Perspectives. Springer, New York Marston J, Boucher S, Downing J, Nkosi B, Steel B (2013) International Children’s Palliative Care Network: working together to stop children suffering. Eur J Palliat Care 20(6): 308–10 Stjernswärd J, Foley KM, Ferris FD (2007) The public health strategy for palliative care. J Pain Symptom Manage 33(5): 486–93 UNAIDS (2013) Global Report. UNAIDS Report on the Global AIDS Epidemic 2013. UNAIDS, Geneva World Health Organization (2002) Definition of children’s palliative care. www.who.int/cancer/palliative/en/ (accessed 27 February 2014) World Health Organization (2011a) Guidelines Ensuring Balance in National Policies on Controlled Substances, Guidance for Availability and Accessibility for Controlled Medicines. WHO, Geneva World Health Organization (2011b) WHO Guidelines on the Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses. WHO, Geneva
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❛Through multinational and professional taskforces the ICPCN has undertaken various studies linked to the need for advocacy, and it continues to collaborate with others to develop the evidence base.❜
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