Introduction to Children’s Palliative Care
The word “palliative” is derived from the Latin word “pallium” which means “a cloak.” In the same way that a cloak protects a person from winter, rain, or other extreme conditions, palliative care is a special kind of patient and family-centered care to provide comfort and support. It focuses on eﬀective management of pain and other distressing symptoms, incorporating psychosocial and spiritual care according to family’s values, beliefs, and culture. The goal is to anticipate, prevent, and reduce suﬀering and to help improve the quality of life of the child and the family, regardless of the stage of the disease and/or need of other therapies.
Sakshi S. a 12-year-old girl from rural Maharashtra came to us with a severe pain and large mass in the leg. Investigations revealed that it was a tumour and she was diagnosed with osteogenic sarcoma, a tumour common in the 12 to 18 years age group. The oncologist treating her had advised the parents to take her home as no further treatment would have helped her. The patient’s parents were not ready to accept the prognosis. They were illiterate and from a very poor socio-economic background. The father was a farm labourer and had mortgaged his house to raise money just to come to Mumbai. He didn’t want to take her home as he felt he would be blamed by the rest of the family if he took her back in the same condition. The patient was also repeatedly asking “Why can such a big hospital not do anything more?”
Apart from physical pain that the patient had there were many other issues to be tackled. There were psychosocial issues such as helplessness, guilt, denial, fear of being blamed. Spiritual issues such as “why does my child has to suﬀer when I have not done anything wrong in my life” were present. Finally, important ﬁnancial worries such as “where to stay in such a big city?” and “who will pay for future treatment?” were foremost in the minds of the family members.
How to deal with such a complex situation? Addressing all these concerns needs a holistic approach. It is not a task to be approached by only the concerned doctors and nurses. It needs a multidisciplinary team who will provide care which is child-centered, need-based and family- focussed. The approaches and focus of the care may change, for instance, initially it might be focussed on seeking treatment and cure but later it might move to accepting the inevitability of death and seeking just palliation. As the disease progresses, the patient’s quality of life will get aﬀected physically, psychologically, socially, spiritually and ﬁnancially. To help the child and family to deal with the situation and accept the inevitability, palliative care plays an important role.
Ideally, palliative care should begin when the life-limiting illness is diagnosed and should continue regardless of whether or not the patient 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 must include the family and use the 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 (WHO, 2010).
Why is Palliative Care Diﬀerent in Children?
Listed below are several reasons why there would be some diﬀerences in addressing concerns and issues that arise when treating children.
- There are a wide variety of childhood conditions causing death before adulthood, many of which are rare and hence there is a limited experience in treating some of these diseases.
- Many of the illnesses are familial; there may be more than one aﬀected child in the family and hence genetic counseling may be required, as well as a stronger social support and/or counselling for various psychological issues such as depression, anxiety that might be more prevalent in these families.
- The time span of children’s illness may be diﬀerent from adults; palliative care may extend over many years.
- Children are in a development process. The disease can aﬀect their capacities of communication and their understanding of disease and death.
- Provision of education to sick children is essential and a legal entitlement and hence this provision needs to be addressed.
- The care of children with life-limiting conditions should be holistic and multi- disciplinary. This requires a range of services and skills of those trained and experienced in the care of children (Figure 1).
- In all settings children should be cared for in a child-centered environment.
- Families are the primary caregivers and that home is the centre of caring (ACT 1998).
- The unit of care is the family; support for the whole family, including siblings.
- Limited autonomy of children involves that.
- They need protection.
- There often are many ethical issues involved.
- Decisions should be made in the best interests of the child.
Classiﬁcation of Diseases: 
- Life- threatening conditions: curative treatment is feasible but can fail (cancer, irreversible organ failure, human immunodeﬁciency virus)
- Premature death inevitable: prolonged period of intensive treatment aimed at prolonging life and allowing participation in normal activities (cystic ﬁbrosis)
- Progressive conditions without curative treatment: is exclusively palliative and may commonly extend over many years (mucopolysaccharidosis)
- Irreversible but non-progressive conditions: causing severe disability which leads to susceptibility to health complications and the likelihood of premature death (cerebral palsy)
Implementation of Children’s Palliative Care:
To practice children’s palliative care in diﬀerent settings, holistic care by multidisciplinary teams play a signiﬁcant role. The essential elements are described below:[3,4]
- Disease management:
- Access to curative treatment.
- Honest communication about diagnosis and prognosis between doctors and patient (if possible)/caregivers.
- Families should not have to choose between life-prolonging care and palliative care, instead they should complement each other.
- Pain and Symptom Management:
- Pain & symptom assessment tools for proper documentation and understanding. For example, pain scales can help in quantifying the pain and help to manage it better.
- Goals of care need to be understood and explained to the patient/caregivers.
- Initially consider the most eﬀective and least invasive treatment.
- Non-pharmacological interventions should be also be used.
- Psycho-emotional Care:
- Assessment of the emotional wellbeing of the child and family.
- Take into consideration the cultural and religious beliefs that play a role.
- Plan of care should provide emotional support and therapies such as counselling, play therapy, art therapy.
- Address the child’s own feelings of fear, grief, anger, anxiety, guilt etc.
- Respect the intimacy of the family and the family belief system and wishes.
- Social Care:
- Evaluation of the interpersonal family relationships and dynamics, and family- support system.
- Empowering the role of each member of the family to take an active responsibility in the care of the patient.
- Education of the extended family and community regarding the condition and care required for the child.
- Enabling reconciliation of damaged relationships if they are harming to the healing/patient’s mental status.
- Access to support from community resources, ﬁnancial aid institutions.
- Facilitation of relationships with other institutions such as hospitals, hospices, rehabilitation or other centres involved in the care of the patient.
- Spiritual Care:
- Evaluation of the beliefs and values of the patient and family.
- Respect what is meaningful for them.
- Address the existential questions and spiritual issues that might be present.
- Facilitate access to appropriate spiritual and religious resources.
- Developmental Care:
- Learning is an essential part of children’s life and it is important to understand its value. Hence a sick child has the right to continue education; either at school or alternatives such as home tutoring.
- Assessment of the developmental needs of the child, assessing verbal, non-verbal, and symbolic methods of communication to fully understand what the child is feeling.
- Support for the siblings facing school diﬃculties due to interruption in stable family life or inadequate ﬁnances due to it being directed towards treatment.
- End of Life Care:
- Anticipation of the symptoms and physiological changes so that appropriate medical care can be directed accordingly.
- Inform the caregiver in charge of decision-making about advance care planning.
- Planning for certain rituals that are performed either close to death or immediately thereafter.
- Discussing about legacies that the patient may want to leave behind and bringing closure to any other matters.
- Grief support for the caregivers (to be initiated immediately).
- Documentation of the death according to the law (issuing of death certiﬁcate if not in the hospital).
- Allowing the family to have time with the deceased child to pray or complete important rituals at that time.
- Bereavement Care:
- Information and discussion with the families about bereavement and loss.
- Access to professionals with expertise such as psychologists and psychiatrists.
- Assessment of the family strengths and vulnerabilities to foresee that there will be adequate support through bereavement.
- Adequate referral to peer and support groups (bereavement groups) where caregivers draw strength in meeting others who have faced similar situations.
Palliative care in children involves multifaceted dimensions, often beset with complex developmental, inter-personal, and psychosocial factors inextricably intertwined with each other. It is imperative to look at all these aspects when treating children.
Every member of the CPC team should have a practical guideline when designing the plan of care that includes the following: access to medical treatment, equipment, and supplies; access to community resources, volunteer networks, ﬁnancial aid organizations and NGOs, and support groups; other services such as rehabilitation, counselling, home care, nursing care, respite and hospice care.
It is imperative for members of the CPC team to be appropriately trained in communication skills, bereavement issues, death and dying, to better serve dealing with a host of complex and diverse issues that may arise. It is also advised that the CPC team continue to remain in touch with grieving families after the death of the child and remain as a source of support for these families.
- Pediatric Hospice Palliative Care – Guiding Principles and Norms of Practice. Canadian Hospice Palliative Care Association and Canadian Network of Palliative Care for Children, March 2006.
- A Guide to the Development of Children’s Palliative Care Services. 3rd edition. ACT (Association for Children Palliative Care). 2009.
- The ACT Charter for Children with Life-threatening or Terminal Conditions and their Families. ACT, Bristol. 1998
- Universal Principles of Pediatric Palliative Care in Children’s International Project on Palliative/Hospice Services (ChIPPS). Compendium of Pediatric Palliative Care. Alexandria, VA. National Hospice and Palliative Care Organization, 2000.
- WHO guidelines on the pharmacological treatment of persisting pain in children with medical illnesses. WHO Press. Geneva. 2012
- The ICPCN Charter of Rights for Life Limited and Life Threatened Children http://www.icpcn.org/icpcn-charter/
- Field MJ, Behrman RE (Editors). When Children Die: Improving Palliative and End-of-Life Care for Children and their Families. National Academy Press. Washington. 2002.