About 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; the principles apply to other paediatric chronic disorders (WHO; 1998a):
- 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.
PRINCIPLES OF CHILDREN’S PALLIATIVE CARE
Palliative care for children requires consideration as a distinct and different speciality involving those experienced in children’s services. The unique issues which need to be taken into account when planning palliative care services for children are outlined below:
- There are a wide variety of childhood conditions causing death before adulthood, many of which are rare.
- Many of the illnesses are familial; there may be more than one affected child in the family and genetic counselling may be required.
- The time span of children’s illness may be different from adults; palliative care may extend over many years.
- Children continue to develop physically, emotionally and cognitively, this affects both their medical and social needs and their understanding of disease and death.
- 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. (ACT/RCPCH 1997) In all settings children should be cared for in a child-centred environment.
- It should be acknowledged that families are the prime careers and that home is the centre of caring (ACT 1993). Services should be co-ordinated to provide flexible, comprehensive support for the whole family, including siblings. (ACT/RCPCH 1997: DoH 1998).
- Different aspects of the palliative care package are delivered by a wide range of services and agencies across health, social and voluntary sectors. This requires close liaison and effective networking to deliver care in a co-ordinated way.
- Provision of education to sick children is essential and a legal entitlement. This adds to the complexity of care provision.
- Legislation and Government initiatives concerning the care of children do not coincide with those relating to adult services. Lobbying pathways and funding sources for palliative care for children are, therefore, mostly different from those for adults.
- Staff in all settings should have training and experience in the care of children. Formal training in palliative care for children, though increasing, is not yet widely available and this has a bearing on the setting of standards.
SCALE OF THE NEED
- Worldwide epidemiological data on mortality and morbidity points to the growing need to focus on improving children’s access to palliative care and its integration in paediatric care.
- The ICPCN estimates that worldwide twenty million children can benefit from palliative care, but access to such services remains an issue. When access to medical facilities is an obstacle, it becomes more important in meeting needs of children and their families by extending palliative care to home based and other community or hospice settings.
- Each year in the United States, approximately 500,000 children cope with life-threatening conditions, and 53,000 children die from trauma, lethal congenital conditions, extreme pre-maturity, heritable disorders, or acquired illness. Less than one percent of children needing hospice services receive it in the United States.
- Figures in England show that the annual mortality rate for children aged less than 19 years with life-limiting conditions is 1.44 per 10,000, and for 20 to 29 year olds 1.64 per 10,000. The estimated prevalence rate for children and young people likely to require palliative care services in England is 16 per 10,000 population aged 0-19 years.
- Prevalence rates for cancer in children in England is 1.1 per 10,000 (1995), 3.9 per 10,000 for cystic fibrosis (1995), 0.2 per 10,000 for mucopolysaccharide (1994), and 1.8 per 10,000 for Duchenne Muscular Dystrophy (1993).
- With the global surge of AIDS/HIV affecting populations, child mortality figures have increased drastically in developing countries due to mother-to-child transmission (MTCT). According to the UNAIDS/WHO Epidemic Update for 2005, out of the 3.1 million people who died from AIDS, over half a million were children under 15 years of age. It is estimated at the end of 2005, 2.3 million children in the world were living with HIV, and 700,000 were newly infected. For example, child mortality figures have nearly doubled in Botswana and Zimbabwe since 1990. Globally, at least a quarter of HIV-infected newborns die before the age of one due to immuno-supression, up to 60% die before the age of two, and most die before the age of five. It is important to consider that due to limited HIV-monitoring facilities in developing countries, estimates are inaccurate, and actual figures will be much higher.
- Children need appropriate pain and symptom management during the course of their illness. Studies have concluded that a vast majority of children with cancer need regular pain medication while in terminal care, whether it is administered orally or intravenously at home. Suffering from pain was more likely in children whose parents reported that the physician was not actively involved in providing end-of-life care.
- Almost 40% of all admissions to hospice programmes in South Africa from 2005-2006 were children and youth under the age of 21.
- In the United States 80 per cent of children under 15 with cancer are cured, but 80 per cent of the world’s children with cancer live in low and middle income countries where there is a higher risk of death because of late diagnosis or lack of treatment. Palliative care, including end of life care, is vital.
- In Germany a national study was done to show that the majority of children dying from cancer do not have access to comprehensive palliative care services at home, and that there needed to be increased education about palliative and end-of-life care.
- With increasing prevalence of infectious diseases such as HIV/AIDS, more children will require specific palliative care needs in the future.
BARRIERS TO ACCESS
In some countries healthcare professionals never acknowledge death in children. The cultural denial of the fact that children actually die prohibits the development of children’s palliative care services.
The taboo around child death, without an open and honest approach in dealing with death and without adequate children’s palliative care options, means that families are often forced to make inappropriate and ill-informed decisions to attempt aggressive curative treatments.
A lack of understanding about what children’s palliative care is.
- Families should not have to choose between life-prolonging care and palliative care, when they can go hand-in-hand. There exists an assumption that palliative care should not be considered until all curative options are exhausted, when in fact palliative care should be seen as significantly improving a child’s quality of life. It should be integrated with curative treatment, and throughout the course of the illness regardless of the child’s outcome.
- Adult hospice and palliative care personnel may be able to provide expertise in end of life care for adults, but often have no paediatric expertise. Many of the conditions that are common in paediatrics are virtually unknown in adult palliative care. This decreases access for families and their children to health benefits such as home-based pain and symptom management, which should be individualised for specific family needs.
- A lack of trained personnel worldwide makes scaling-up palliative programmes difficult with limited resource capacity.
- There is insufficient research and evidence-base on the use of medication to treat pain and other symptoms for children. Most studies have not included children as test subjects due to ethical reasons, and therefore limited information on side effects of drugs and dosage effectiveness is available.
- Most populations have limited access to pain-relieving medications in resource-limited settings.
- Increased high-technology interventions do not always allow those in less well-developed countries to have access to basic health care services. Initiatives in developing countries should be community-orientated and sustainable.
- HIV progresses to AIDS much more rapidly in babies than adults, increasing their risk of dying in their very first years due to immuno-supression. With most children having no access to treatment for HIV/AIDS, it is challenging to prevent infection and death of children in resource-limited settings, and palliative care will have an increasing role in improving the quality of life of these children as well as the length of their life.
Courtesy of the International Children’s Palliative Care Network. To find out more please visit www.icpcn.org