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About CPC

The ICPCN supports the World Health Organization (WHO) definition of children’s palliative care:

Palliative care for children represents a special, albeit closely related field to adult palliative care. WHO’s definition of palliative care appropriate for children and their families is as follows;

Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family. It begins when illness is diagnosed and continues regardless of whether or not a child receives treatment directed at the disease. Health providers must evaluate and alleviate a child’s physical, psychological, and social distress. Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited. It can be provided in tertiary care facilities, in community health centres and even in children’s homes.

More details on palliative care can be found here on the WHO website

You can find the definition of children’s palliative care in different languages here:

Afrikaans

“Palliatiewe sorg vir kinders is die aktiewe, omvattende sorg van die kind se liggaam, siel en verstand, en sluit ook die versorging van die gesin in. Dit neem ‘n aanvang wanneer die siekte gediagnoseer word en gaan voort, ongeag daarvan of die kind behandeling ontvang wat gemik is op die siekte. Gesondheidsversorgers moet die kind se fisiese, sielkundige en sosiale nood evalueer en verlig. Effektiewe palliatiewe sorg vereis ‘n breë multidissiplinêre aanslag wat die gesin insluit en gebruik maak van beskikbare hulpbronne in die gemeenskap; dit kan met groot sukses geïmplementeer word, selfs al is hierdie hulpbronne beperk. Dit kan voorsien word in tersiêre sorg-fasiliteite, in gemeenskaps-gesondheidsentrums, asook in kinders se ouerhuise.”

Wêreldgesondheidsorganisasie 2002

Norwegian

WHOs definisjon på palliativ behandling passende for barn og deres familie er som følger:
Prinsipielt søkes det mot andre pedriatiske, kroniske sykdommer.
Palliativ behandling for barn er den optimale behandling av barnets kropp, hjerne og eksistensielle behov, og det involverer også å gi støtte til familien. Behandlingen begynner når diagnosen er stilt, og fortsetter selv om barnet ikke får behandling direkte rettet mot sykdommen. Helsepersonellet må evaluere og lindre barnets fysiske, psykologiske og sosiale lidelser. Effektiv palliativ behandling krever en bred tverrfaglig tilnærming som inkluderer familien og gjøre nytte av tilgjengelig kommunale resurser. Dette kan bli implementert selv om resurssene er begrenset, det kan gis i kompetansesentre, i samfunnet helsestasjoner og i barnets hjem.

Portuguese

“Os cuidados paliativos para crianças são o cuidado total do corpo, mente e espírito da criança e envolvem também o cuidado da família. Começa quando a doença é diagnosticada e continua independentemente de uma criança receber tratamento directo para a doença. Os prestadores de cuidados de saúde têm de avaliar e aliviar o sofrimento físico, psicológico e social da criança. Os cuidados paliativos efectivos requerem uma abordagem multidisciplinar abrangente, que inclui a família, e utilizam todos os recursos da comunidade disponíveis; podem ser implementados com sucesso mesmo quando os recursos são limitados. Podem ser fornecidos em instalações de cuidados terciárias, em centros de saúde comunitários e nas residências das crianças.”

Organização Mundial de Saúde 2002

Russian

“Паллиативная помощь детям – это активная, всесторонняя забота о теле ребенка, его психике и душе, а также поддержка членов его семьи. Она начинается с момента установления диагноза и продолжается в течение всего периода заболевания, в том числе на фоне проводимого радикального лечения. Специалисты, оказывающие помощь, должны провести оценку и облегчить физические, психологические и социальные страдания ребенка. Для обеспечения эффективности паллиативной помощи необхода реализация  широкого мультидисциплинарного подхода, при этом в оказании помощи принимают участие члены семьи ребенка и  используются общественные ресурсы; помощь может осуществляться успешно даже при  ограниченных ресурсах. Она может быть организована в учреждениях третичной медицинской помощи, в общественных центрах здоровья и даже в детских домах”.
Всемирная организация здравоохранения, 2002г.

Translator:  Dr Elena Vvedenskaya

Spanish

“El cuidado paliativo para niños es el cuidado activo, total del cuerpo, mente y espíritu del niño, y también abarca el cuidado ofrecido a la familia. Empieza cuando se diagnostica la enfermedad y continúa independientemente de que el niño reciba un tratamiento orientado hacia su enfermedad. Los agentes sanitarios deberán evaluar y aliviar los dolores físicos, psicológicos y sociales de los niños. El cuidado paliativo eficaz exige un amplio enfoque multidisciplinario que incluye la familia y utiliza los recursos disponibles de la comunidad; puede implementarse con éxito incluso cuando los recursos sean limitados. Puede ofrecerse en instalaciones de cuidados terciarios, en centros sanitarios públicos y en los hogares de los niños”.

Organización Mundial de la Salud 2002

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Frequently Asked Questions

Here are some frequently asked questions and answers about children’s palliative care. Remember, if there is something you need to know and you can’t find the answer on our website please contact us on info@icpcn.org and we will do our best to help you.

What is children’s palliative care?

What is children’s palliative care?

Palliative care for children is holistic care delivered by a multidisciplinary team of people with the appropriate training. It provides tailored support to address the physical, spiritual, emotional and social needs of a child with a life-threatening or life-limiting condition and extends this care to the child’s family. It can begin at the time of diagnosis or at any point along the progression of the illness even when curative treatments are appropriate. Palliative care for children continues throughout the remainder of the child’s life, accompanies and supports the child and the family at the end of life and continues this support into the bereavement period, for as long as it is needed. The focus of care is on improving and enhancing quality of life, ensuring dignity in death and providing support in bereavement.

Where is children’s palliative care provided?

Where is children’s palliative care provided?

Where palliative care is provided depends on the resources available, the needs of the child and their family, and the ability of the service to provide care in various settings. Where possible children receive care at home. However, palliative care can be offered at home, at school, in the community, at a clinic, a hospital (out-patient, day-care, in-patient), and where available, in a children’s hospice. As palliative care is a philosophy of care it can be provided wherever we find the child and their family.

What is the difference between children’s palliative care and a children’s hospice?

What is the difference between children’s palliative care and a children’s hospice?

Children’s palliative care can be provided in a range of settings – a children’s hospice is just one place where palliative care can be provided. A children’s hospice is a specialist organisation that provides palliative care for a child or young person with a life-limiting condition and their family. It aims to meet the needs of children and their families through a range of services which can include respite care, end-of-life care, emergency care, 24- hours telephone support, practical help, advice, home care, inpatient care, day care and information and bereavement support for all family members. Hospices are often non-governmental organisations (NGOs) or charities, and they may provide all or some of the services identified here. They work closely with local hospitals, community teams etc to ensure the ongoing provision of palliative care to all children and young people who need it. The availability of children’s hospices varies from country to country.

Often the term ‘palliative care’ and hospice’ care are used interchangeably, however a hospice is one way of delivering palliative care. In the USA and other countries that follow the US system, there is a distinct difference between the two terms with ‘palliative care’ being holistic care provided to any person with a severe, complex, life-limiting condition and ‘hospice care’ being defines as care that is provided to those nearing the end-of-life (life expectancy <6 months) and this is related to their health financing systems.

What are life-threatening and life-limiting conditions?

What are life-threatening and life-limiting conditions?

Life-threatening conditions are those where there is a possibility of a cure or remission, failure of which will lead to death. Caner is an example of a life-threatening condition. 

Life-limiting conditions (sometimes referred to as life-shortening) are those for which there is no cure and death is inevitable, either in childhood or early adulthood. Some life-limiting illnesses progress quickly, and others such as Duchenne muscular dystrophy, may cause a slow deterioration over many years.

Other terms that are often used within children’s palliative care include life-shortening, complex conditions, and children experiencing Serious health-related suffering’ (SHS). SHS was defined in the Lancet Commission report as “Suffering is health-related when it is associated with illness or injury of any kind. Suffering is serious when it cannot be relieved without medical intervention and when it compromises physical, social, or emotional functioning. Palliative care should be focused on relieving the SHS that is associated with life-limiting or life-threatening health conditions or the end of life.”

Who is on a children’s palliative care team?

Who is on a CPC team?

Due to the holistic nature of children’s palliative care, it is ideally provided by a multi-disciplinary or inter-disciplinary team of professionals and other people who have received appropriate training in the field. The members of a children’s palliative care team will vary according to the needs of the child and family as well as the available resources of the organisation/community. Members of this team can include, but is not restricted to, paediatricians, doctors, nurses, psychologists, social workers, counsellors, teachers, dieticians, physiotherapists, occupational therapists, child life specialists, play therapists, spiritual leaders, music and art therapists, the child and their family.  Where resources allow, families are assigned a ‘key worker’ who ensures a coordinated and timely response to their needs.

How does children’s palliative care differ from adult palliative care?

How does CPC differ from adult palliative care?

While there are many similarities between adult and children’s palliative care, there are also very distinct differences. Some of these include:

  • A smaller number of children die each year compared to adults
  • Many rare childhood conditions will never be encountered in the adult population
  • Multiple family members can be affected by the same genetic condition
  • The time span of a childhood condition can extend to a number of years which may require the patient to transition from child centred to adult palliative care services at some stage
  • Children’s palliative care embraces the whole family. Family members, especially parents and siblings, will be vulnerable as they face the changes in life that the child’s diagnosis creates, and as they anticipate bereavement.
  • Children’s palliative care providers need to be aware of the continuing physical, emotional and cognitive development throughout childhood and respond to each child’s changing levels of communication and their ability to understand.
  • Provision of education and play when a child is seriously ill is essential. This introduces an additional dimension which adds to the complexity of care provision.
  • The way that children metabolise medications varies, and so it is important to use the correct paediatric dosages for children.

What are some of the challenges for developing CPC services?

What are some of the challenges for developing CPC services?

There are a range of challenges to the development of CPC services which include:

  • A lack of understanding about what children’s palliative care is and the need for such services.
  • There is an assumption that palliative care should not be considered until all curative options are exhausted, whereas palliative care should be seen as significantly improving a child’s quality of life and should be integrated with curative treatment, and throughout the course of their illness.
  • Adult palliative care specialists may not be familiar with some of the conditions requiring palliative care in children, thus limiting the services they can provide.
  • A lack of trained personnel worldwide makes developing and scaling-up CPC programmes difficult with limited resource capacity.
  • There is insufficient evidence on CPC, including the use of medications to treat pain and other symptoms.
  • Many populations, particularly in LMICs, have limited access to pain-relieving medications, including opioids. Where they are available, they may not be in paediatric formulations and there may be unduly restrictive laws and procedures hindering their use.
  • Many healthcare professionals have misconceptions about the use of opioids in children, and have little knowledge on how to prescribe opioids for children within palliative care.

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Principles of CPC

Palliative care is a human right for any child with a life-threatening or life-limiting condition, regardless of where they live, their condition, their gender, their age, etc. No child should be left in pain and suffering.

Palliative care is a philosophy of care that can be provided across a range of settings, and across low- middle- and high- income countries.

Palliative care should be provided from diagnosis through to death and into bereavement, or even prior to diagnosis as for some children a diagnosis may never be found. It should also be provided alongside disease-directed treatments. The relationship between PC and disease-directed treatments can be complex and varies for different conditions and situations – parallel planning as seen in the ‘Bow-tie’ model for disease-directed alongside palliative care is important. As the disease progresses the emphasis changes.

The time span of children’s illness varies, and palliative care may extend over many years.

Principles Of CPC

There is always something that we can do – in CPC we never say “There is nothing more we can do” – CPC is an active process; there is always something that can be done to help a child and their family have a better quality of life, even when that life may be short.

Working in CPC can be emotionally challenging, however it is also rewarding and provides times of great joy, fulfilment and delight.

The care of children with life limiting conditions should be holistic and multi-disciplinary. This requires a range of services and the skills of those trained and experienced in the care of children. In all settings children should be cared for in a child-centred environment.

Families are the primary carers and services should be co-ordinated to provide flexible, comprehensive support for the whole family, including siblings.

Staff in all settings should have training and experience in the care of children as CPC is provided by both specialists and generalists.

Which children need palliative care?

There are a range of children who need access to palliative care, and this will vary from country to country according to resources available. Cancer accounts for around 4% of children needing palliative care, with premature birth and birth trauma and congenital malformations providing the highest need globally (33.9%) alongside HIV disease (29.6%) (Global Atlas of Palliative Care 2020).

Worldwide need by disease conditions

Life-limiting or life-threatening conditions are often described in four broad groups. These groups can be helpful to identify children in need and illustrate the range of conditions in children which may require palliative care, however they are not exclusive or fixed (A guide to children’s palliative care 2018).

CPC Categories

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Global Need for CPC

The need for accessibility to CPC varies globally, with differences seen between countries and regions. Most children (98%) needing palliative care live in low- and middle- income countries.

The development of quality CPC services has been a neglected area and often lags behind that of PC development for adults. ICPCN estimate that worldwide 20.1 million children can benefit from palliative care with >8 million requiring specialist service provision.

In 2017 the Lancet Commission on Alleviating the Access Abyss in palliative care and pain relief identified the concept of Serious Health-related Suffering (SHS) and initially estimated that >5.3 million children <15 years experienced SHS each year worldwide with 1/3 of children who dies in 2015 experiencing SHS. More recent work shows that a more realistic figure may be 9-10 million children experiencing SHS each year.

Children and their families have specific and intensive palliative care needs that can easily be overlooked because the absolute number of paediatric patients is low compared with adul

Global levels of service provision

Access to palliative care for children globally varies from country to country and within countries. It is estimated that only 5% of children globally who need palliative care have access to it.

CPC is a developing field, with new services evolving continually. ICPCN has created a map as a visual representation of developments across the world.  Our latest map is from 2019 and we are in the process of updating it for 2023.

Other mapping exercises take place including those in the regions, however it is important to note that these become out of date as soon as they are published. e.g.: Africa (APCA Atlas 2017), European Atlas (2019), Latin America.

ICPCN World map with country names 2019

A Global History Of CPC

“The history of children’s hospice and palliative care is a rich tapestry of visionary individuals, pioneering organisations, and social trends that have influenced the development of a field that aims to relieve the suffering of neonates, children and adolescents with life-limiting conditions” (Oxford Textbook of PC for Children 2021)

A study was undertaken to look at the global history of CPC and identify the ‘early’ pioneers, include their person narratives, and highlighting the influence on the global development of the field. A timeline has been developed that represents important milestones, tries to honour everyone’s contribution, but only includes key events whose influence has led to international or regional development.

Timeline of important milestones

A timeline has been developed that represents important milestones, tries to honour everyone’s contribution, but only includes key events whose influence has led to international or regional development (based on Fraser L, Connor S and Marston J. Chapter 1: History and epidemiology. In Hain R, Goldman A. Oxford Textbook of Palliative Care for Children 2021. Third Edition. Oxford University Press).

1976

  • Home care for the dying child (Minnesota USA)

1978

  • EDMARC Hospice for Children (Virginia USA)
  • The Private Worlds of Dying Children; Book (USA)

1980

  • CLIC (Cancer and Leukaemia in Children) UK
  • Neonatal Hospice, Denver Children’s Hospital USA

1982

  • Helen House Children’s Hospice opens (Oxford, UK)

1983

  • Children’s Hospice International established and first CHI Confrence (San Francisco, USA), Hospital Based PPC service in St Mary’s Hospital, New York

1984

  • College course on Children and Dying (USA)

1985

  • Very Special Kids (Malvern, Australia)

1986

  • Rainbows Trust (UK)

1987

  • Listen-my child has a lot of living to do- book (UK)
  • Great Ormond Street Hospital Programme (London, UK)

1988

  • ACT – The Association for Children with Terminal Illnesses (UK)
  • UN Convention on the Rights of the Child, UN (Geneva, Switzerland)

1990

  • Hospital of San Jose Paediatric Pain and PPC Clinic, Costa Rica

1994

  • IWK Health Centre PPC Programme Canada
  • Warsaw Hospice for Children and Belarusian Children’s Hospice open

1995

  • OSI: Project on Death in America (USA)
  • Merimna Foundation, Athens, Greece
  • IwK Health Centre PPC Programme Canada
  • Canuk Place Children’s Hospice opened (Vancouver, Canada)

1997

  • Diana Princess of Wales Memorial Fund
  • Cotlands Children’s Hospice (HIV/AIDS) Johannesburg

1998

  • WHO Definition of Palliative Care for Children and Guidelines developed for Cancer pain and CPC
  • St Nicholas (now Sunflower) Children’s Hospice opens (Bleomfontein, South Africa)
  • CHiPPS Conclave
  • Bear Cottage opened in Sydney Australia

1999

  • Foundazione Maruzza Rome, Italy
  • Salzburg PPC Seminars (Austria)

2000

  • International Palliative Care Initiative (Open Society Institute)

2001

  • Postgraduate Diploma in PPC (Cardiff University)
  • Tata Memorial Centre PPC Programme, Mumbai, India

2002

  • First Cardiff Conference in PPC and ELNEC course starts
  • Umodzi, PPC hospital team at QECH (Blantyre, Malawi)
  • First Chair in Paediatric Palliative Medicine (Germany)

2004

  • George Mark Children’s House, California USA

2005

  • ICPCN established
  • ICPCN first statement on PC for children
  • Wishing Well foundation, Bangkok, Thailand
  • Bundesverband Kinderhospiz, Germany

2006

  • 1st Edition Oxford Textbook of Palliative Care for Children
  • Hospice Case Sperantei PPC Team, Brasov, Romania
  • Rachel House Children’s Hospice, Jakarta, Indonesia
  • Butterfly House, China
  • 1st South African Hospital CPC service – Big Shoes -Baragwanath Hospital (Soweto)

2007

  • PPC fellowship, Hyderabad, India

2008

  • Children’s Palliative Care in Africa Textbook

2009

  • Beacon Centre Project, SA, Tanzania and Uganda (DPOWMF)

2010

  • EPEC Pediatric course begins (USA)
  • 5 year project Developing PPC in Malawi and Maharashtra, India
  • True Colours Chair for Palliative Care for Children and Young People, London UK

2011

  • ICPCN e-learning modules start
  • 1st CPC unit opens in Garissa, Kenya

2012

  • WHO Guidelines on Persisting Pain in Children with Medical Illnesses
  • Ukraine’s first PPC Programme in Ivano-Frankivsk
  • Bayat Abdullah Children’s Hospital, Kuwait

2013

  • CPC Diploma for Africa, Mildmay Uganda
  • Three country CPC needs estimate (Zimbabwe, South Africa, Kenya) ICPCN+UNICEF
  • The Rocking Horse Project opened in Eswatini (formerly Swaziland)

2014

  • WHA 67.19 resolution on Palliative Care (Geneva, Switzerland)
  • ICPCN Hats On for CPC Global Awareness Day
  • 1st ICPCN Conference in Mumbai, India. Declaration of Mumbai on Euthanasia and PAD for children

2015

  • Kiran Stordalen and Horst Rechelbacher Pediatric Palliative and Integrative Medicine Clinic: Children’s Hospitals and Clinics of Minnesota
  • Religions of the World Charter for Children’s Palliative Care developed (Vatican City, Italy)

 

2016

  • Commitment of Buenos Aires (2nd ICPCN Conference)

2017

  • Lancet Commission report on Palliative Care and UHC
  • Firefly World Children’s Hospice opens in Tbilisi, Georgia

2018

  • WHO Guide to Integrating Palliative Care into Paediatrics published

A more comprehensive history can be found here.

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Models of Care

There are a wide range of models of CPC provision

The type of model will depend on the health system in which you are working, the resources available, and the cultural environment, amongst others.

Regardless of the model of care provided, it is essential to develop strong partnerships that support the holistic needs of the child and their family.

In both high- and low- resource settings, palliative care can be provided in a variety of locations, including home, hospice and in-patient facilities, and where possible should be based on the child and family’s preferences.

There are common principles that should be applied in all settings and resource levels.

Home

Home

  • Parents often prefer to care for their children at home.
  • Home-based care involves visits from skilled nurses and other health care providers.
  • Often there is 24-hour phone access to a member of the care team although this is not always the case.
  • Community-based palliative care programmes have been implemented in a range of high- and low-income settings.
  • Can be a lower cost model of care. May involve volunteers and/or community health workers providing regular support – and refer to health professionals as appropriate.

Hospice

Hospice

  • Countries from all income levels provide CPC through free-standing hospices
  • Offer a range of services including symptom management, respite, end-of-life care and bereavement support
  • Hospices generally have in-patient facilities and may also provide day and home-based care services
  • Care provided by a dedicated multi-disciplinary team

Hospital

Hospital

  • In many hospitals there are palliative care teams that provide consultation services – these may be dedicated to CPC, or they may see both children and adults, depending on the type of hospital and resources available.
  • Hospital based PC teams provide multidisciplinary support from a wide range of practitioners
  • Hospital based PC teams work alongside primary care teams

Across the health system

Across the health system

  • Important that services are provided throughout the health system
  • Ideally need an integrated service where children can access palliative care across the care continuum.

Key elements of an effective CPC programme identified in a study undertaken by ICPCN and Global Partners in care, include:

  • It puts the child and their family at the centre of all they do
  • It has a clear and strong leadership
  • It is focused on the vision
  • Linked to what makes the programme unique
  • Provides an holistic approach to care along with different components of care
  • Has a clear strategy
  • Is in touch with changes in the environment
  • Is adaptable and yet consistent in their approach

The WHO has published a handbook on ‘Integrating palliative care and symptom relief into paediatrics: A WHO guide for health care planners, implementers and managers’., It is helpful when developing services and is available in English and Russian.

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