Palliative care is an essential right for anyone with a life-threatening illness whether they are a child or an adult. All children and families will have universal palliative care needs, regardless of their country of origin.
Children need appropriate pain and symptom management during the course of their illness. Studies have concluded that the vast majority of children with cancer need regular pain medication while in the terminal phase of their condition. Suffering from pain was more likely in children whose parents reported that the physician was not actively involved in providing end-of-life care.
In Bangladesh there are an estimated 6000-9000 new cases of childhood cancer annually, however, less than 25% of these children are actually diagnosed(1). For children who begin treatment, cure rates are reported to be 50-60%(1). Accurate figures for the prevalence of other disease, such as HIV/AIDS, thalassemia, cerebral palsy, multi-drug resistant (MDR)-TB, where children could benefit from palliative care are lacking.
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In total, it is anticipated that that 29 000 children need specialized end of life palliative care in Bangladesh, according to data published by the World Health Organization and the World Hospice Palliative Care Association(3).
Barriers to developing children’s palliative care services in Bangladesh:
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It is difficult for healthcare professionals to acknowledge death in children, and this denial can restrict the development of children’s palliative care services.
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It is difficult to discuss death in children, but without an open and honest approach, families are often forced to make inappropriate and ill-informed decisions and often attempt aggressive treatments, with no chance of cure.
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Many health care providers and members of the public are unaware about the value of children’s palliative care and how it can help a child and family.
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There is an incorrect belief that families must choose between life-prolonging care and palliative care. In reality, these two types of treatment can go hand-in-hand. It is wrong to assume that palliative care should not be considered until all curative options are exhausted, when in fact palliative care can significantly improve a child’s quality of life and may even prolong the duration of their life. Thus, palliative care should be integrated with curative treatment, and be offered throughout the course of the illness regardless of the child’s outcome.
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Adult palliative care providers may not have experience with children. Many of the conditions that are common in paediatrics are virtually unknown in adult palliative care
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A lack of trained personnel in Bangladesh and worldwide makes scaling-up palliative programmes difficult with limited resource capacity.
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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.
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There is limited access to essential strong pain-relieving medications, such as morphine, in Bangladesh
Palliative care for children requires consideration as a distinct and different specialty 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:
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There are a wide variety of childhood conditions causing death before adulthood, many of which are rare.
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Many of the illnesses are familial; there may be more than one affected child in the family and genetic counselling may be required.
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The time span of children’s illness may be different from adults; palliative care may extend over many years.
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Children continue to develop physically, emotionally and cognitively, this affects both their medical and social needs and their understanding of disease and death.
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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.
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It should be acknowledged that families are the prime careers and that home is the centre of caring.
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Services should be co-ordinated to provide flexible, comprehensive support for the whole family, including siblings.
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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.
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Provision of education to sick children is essential and a legal entitlement.
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Staff in all settings should have training and experience in the care of children.
Category 4:
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Irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health complications and likelihood of premature death.
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Examples:
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Severe cerebral palsy
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Prematurity with residual multi-organ dysfunction or severe chronic pulmonary disability
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Multiple disabilities following brain or spinal cord injury
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Severe brain malformations, (e.g. holoprocencephaly, anencephaly)
Conditions where children may require paediatric palliative care
Barriers to children's palliative care
Scale of the need
The Global Atlas of Palliative Care at the End of Life lists the following conditions as the most common diagnoses where children need palliative care. This figure illustrates the global distribution of children in need of palliative care at the end of life.
Principles of palliative care (ICPCN website)
About Children's Palliative Care
Category 1:
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Life-threatening conditions for which curative treatment may be feasible but can fail, where access to palliative care services may be beneficial alongisde attempts at life-prolonging treatment and/or if treatment fails.
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Examples:
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Advanced or progressive cancer or cancer with a poor prognosis
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Complex and severe congenital or acquired heart disease
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Trauma or sudden severe illness
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Extreme prematurity
Category 3:
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Progressive conditions without curative treatment options; treatment is exclusivley palliative and may extend over many years.
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Examples:
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Progressive severe metabolic disorders, (e.g. metachromatic leukodystrophy, Tay-Sachs disease, severe mitochondrial disorders)
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Certain chromosomal disorders, (Trisomy 13 and 18)
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Severe osteogenesis imperfect subtypes
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Batten disease
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All children with a life-threatening or life-limiting illness should have access to paediatric palliative care
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Diagnosis is only part of the process; the severity of the disease and subsequent complications, as well as, the needs of the child and family should be taken into account
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Life-limiting and life-threatening conditions affecting children and young people can be defined broadly into four groups; however, categorisation is not easy and the examples used are not exclusive.
Category 2:
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Conditions where premature death is inevitable, there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities, and maintaining quality of life.
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Examples:
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Cystic fibrosis
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Severe primary immunodeficiencies (SCID, XLA and others)
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Human immunodeficiency virus infection
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Chronic or severe respiratory failure
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Renal failure (non-transplant candidates)
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Muscular dystrophy, myopathies, neuropathies
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Severe short gut, TPN-dependent
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Complex and severe congenital or acquired heart disease
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Trauma or sudden severe illness