World Hospice and Palliative Care Day: IAPC’s Special Feature on Paediatric Palliative Care- 2
Author: Dr. Krithika S. Rao
Assistant Professor, Department of Palliative Medicine and Supportive Care
Kasturba Medical College, Manipal, Karnataka, India
Paediatric Palliative Care (PPC) has been identified as a specialized care modality that seeks to improve the quality of life of children living with life-limiting and life-threatening illness, regardless of the stage of the disease.
The WHO (2018) defines Peadiatric Palliative Care as ‘the prevention and relief of suffering of adult and Paediatric patients and their families facing the problems associated with life-threatening illness. These problems include the physical, psychological, social and spiritual suffering of patients, and psychological, social and spiritual suffering of family members.’
How does Peadiatric Palliative Care differ from Adult Palliative Care?
While the general principles of Palliative care are applicable across age groups, Paediatric Palliative Care pays special attention to the physical, psychological development, ethical and spiritual needs that are unique to children. Other salient differences include
- attending to the child’s ever changing needs corresponding to the child’s developmental stages
- the need for communicating sensitively and appropriately as per the child’s emotional and cognitive development
- assessing the impact of the child’s illness on the family (including the economic burden)
- challenges in prognostication and differing health conditions with unclear diagnosis
- challenges in clinical decision making
- the need to adhere to Paediatric drug formulations and dosing
- the provisioning of a child-friendly clinical environment
What is the need for Paediatric Palliative Care?
Global estimates report that 21 million children (neonates, infants, children, and adolescents up to 19 years of age) are in need of Paediatric palliative care services each year. The American Academy of Paediatrics, calls for an integrated model of PPC, in which ‘the components of palliative care are offered at diagnosis and continued throughout the course of illness, whether the outcome ends in cure or death’. In 2015, the United Nations General Assembly established the Sustainable Development Goals (SDGs) with SDG 3 aiming to ensure healthy lives and promote well-being for all at all ages. SDG 3.8 providing special focus towards achieving Universal Health Care which includes access to quality essential health care services. Thus, it is absolutely essential to widely provision and integrate Palliative care within a country’s healthcare system to help a country achieve the SDGs, as palliative care aims to attend to and ensure the well-being of those with serious or life-threatening illness.
Paediatric Palliative care services at KMC Manipal
The Paediatric Palliative Care services at KMC Manipal, is one the first such service in this region of Karnataka, to fully integrate palliative care with Paediatric Oncology services. Our collaborative multidisciplinary teams help provide physical symptom management for children with cancer, from the time of diagnosis along the continuum up to end-of-life, along with provisioning Psychosocial support to both children and their caregivers. Our consultation and liaison with General Paediatrics, Paediatric Surgery and Neonatology has also helped in providing care for children with other life limiting illnesses.
Experiences at KMC Manipal
A newborn diagnosed with Severe Type II Osteogenesis imperfecta, was referred to us by Neonatology services, as the neonate was in extreme pain and distress. The child’s parents’ on the other hand, were unable to cope with the child’s distress as they were still coming to terms with the news of the grave prognosis of their child’s life-threatening condition at birth. Post discussions with the Neonatologists, we administered the neonate with appropriate analgesics and began supporting and empowering the parents to relive them from their distress. Once the situation stabilized, we advised the primary team to discharge the child for end-of-life care at home, with morphine prescribed for pain management. Though reluctant initially, the primary team did eventually discharge the child to be cared for at home.
This experience brought about a positive change in the physicians’ attitude by making acceptable the adoption of a palliative care approach for children with life-threatening and life-limiting illnesses. This further led to increased referrals of children with various other conditions like Congenital Genetic Disorders with failure to thrive, Severe Birth Asphyxia in Neonates, children with end stage organ diseases with complex issues, acute cases with sudden deterioration like Brain death following Hypoxic Ischaemic Encephalopathy due to intractable seizures, and the start of several conversations and discussions around Withholding / Withdrawal of Life sustaining treatments and the provisioning of quality End-of-Life care.
Our Paediatric Hemato-oncology services began in December 2019. This resulted in the emergence of regular multidisciplinary team (Paediatric oncology and Paediatric Palliative Medicine team) meetings to discuss treatment plans, appropriate communication strategies with parents and children, mechanisms for co-management and symptom management, the identification and management of psycho-social needs of the child and the parents’, the recognition of the need for end-of-life care and comfort care, and the need for bereavement support to distraught families.
Access to Paediatric Palliative Care and it’s barriers
Access to Paediatric Palliative Care in India, is limited to only a handful of tertiary care centres who are able to cater to only a limited population. Major barriers that deter a sick child from accessing palliative care is the primary physicians’ lack of awareness regarding the principles of palliative care and the lack of skilled Paediatric Palliative Care professionals throughout the country. Barriers for reduced referral by Paediatricians to Paediatric Palliative Care may possibly be due to the Paediatricians’ feeling of abandonment / break in therapeutic alliance, the loss of hope, gatekeeping and control attitudes due to lack of trust on the Paediatric Palliative Care providers.
The need of the hour is to design policy changes to help narrow this gap by advocating for Paediatric palliative care through increased education and research activities (in India) and make available sufficient training opportunities to empower Paediatricians and Palliative Care Professionals to become Specialist Paediatric Palliative Care practitioners. We must adopt practicing the ‘palliative care approach for all’ and ensure equitable access in palliative care for children with life-limiting / life threatening illness. Echoing the sentiments of Ann Richardson, ‘We cannot change the outcome, but we can affect the journey’.