Baby of sultana (name changed) whose parents lived in the by lanes of city of Hyderabad with father making a living as a taxi driver was referred to the tertiary children’s hospital as she was diagnosed with a birth defect called meningomyelocele. Unlike in a resource rich country where this baby would have gone into an immediate surgery for correction, baby of sultana was not so fortunate as her parents could not afford the timely investigation and surgery. Instead, she developed complications and died within one month.
Rakesh, a handsome 12-year-old lad growing up in a agricultural laborer family in a village was referred by local doctor to Hyderabad for treatment of maggots from a bleeding and non- healing wound on his leg. It soon emerged that the boy was suffering from hemophilia which was not diagnosed and treated.
A desperate wealthy family approached a helpline as their 9 year son Piyush was suffering from severe headache caused by an advanced malignant brain tumor and was struggling in the intensive care unit of a local hospital for want of pain relief.
Geeta, an eight years old school going child was unfortunate to develop a viral infection which resulted in severe damage to her brain. She is now severely incapacitated and struggling with a severe form of uncontrolled dystonia.
In India, it is estimate that there are 1.6 million children who are in need of pediatric palliative care1. Treatment of childhood cancer is a success story in the west, while in India, less than 25% survive2.Palliative care should be considered a key component of the care of all children with cancer in low-income settings3,4 .
But the reality is that pediatric palliative care (PPC) is yet to take roots except for a few mostly NGO driven programs. This care has not found space both in the state as well as the private sector hospitals. The challenges of providing care for many such children in the absence of resources in terms infrastructure, funds, technical expertise are immense and poorly understood.
I am associated with a large pediatric palliative care program in the region with a well-integrated service in the public cancer hospital called MNJ Institute of Oncology and RCC and Niloufer Children’s hospital in Hyderabad and, with its linkage to a non- governmental organization called Pain Relief and Palliative Care Society, in the community through an exclusively pediatric home-based palliative care and a 10 bed children’s hospice named, ‘Mandara’ (Hibiscus).
On an average, 100 children are referred for palliative care every month in MNJ Institute of Oncology and Niloufer children’s hospital. Additionally, about 20 children are admitted in the hospice every month and 150 children are registered under the home care program at any point of time (https://www.palliativecare.in/improving-access-to-children-living-with-life-limiting-conditions/) . The program is also linked to an extensive district based palliative care program embedded in the public health system of the state of Telangana. The above-mentioned cases are just a few examples of a wide range of disease conditions for which children are referred for pediatric palliative care in our program.
More than a decade of running this program has given some insights into some of the challenges faced in providing pediatric palliative care in a LMIC setting:
- The large number and wide geographical distribution of children with chronic diseases requiring palliative care poses logistical challenges like quality vs coverage and care coordination. Most children and families wish to stay at home instead of in hospital.
There is limited evidence describing the models of palliative care services in developing countries which are best suited, sustainable, cost-effective and can be emulated.
- The broad and heterogenous conditions requiring pediatric palliative care is another challenge. Actual needs assessment for palliative care for children in India will always be complex because of uncertainty about the patient population and the nature of palliative care required for children. Some of the conditions are found to be very endemic to our population such as sickle cell disease, malaria, post tuberculosis/ Dengue/ HIV related encephalopathy. Many rare diseases and genetic conditions are never properly diagnosed due to lack of resources. The dilemma regarding the need to define when and who requires palliative care has resulted in creating confusion in the minds of the pediatricians, other health workers and policy makers alike.
- Complexity of the patient care requiring multidisciplinary/ interdisciplinary intervention to address their needs and support becomes a challenge when resources are limited. The palliative care team often take up the role of multitasking and coordinating beyond their means like providing acute medical care, finding resources to diagnose, treat, rehabilitate, referrals , genetic counselling and helping with planning pregnancy etc.
- Lack of access to opioid medications cause needless suffering to many children in pain. Major barriers to access to opioids are complicated regulations and problems related to attitude and knowledge regarding pain relief and opioids among professionals and the public alike.
- Duration of palliative care needed in children with incurable disease is variable, difficult to predict because many non-cancer conditions require long term care. This becomes a challenge when paediatric palliative care facilities and home based palliative care support are sparse.
- In addition to shortage of paediatric palliative care services, there is a nationwide shortage of workforce with expertise in delivering palliative care to children. Lack of training of healthcare professionals in LMIC has been identified as a major obstacle to the provision of palliative care1.There are only a few residency and fellowship programs providing formal training in PPC to paediatricians or oncologists. The absence of such training has resulted in reluctance and inadequate referrals, fear of opioid usage and poor symptom management.
- Parents and extended family members like grandparents play a pivotal role in the care plan, communication, decision making etc when the child is sick. This sometimes becomes a barrier when they refuse to accept the situation which often stems from their deep-rooted belief system related to death and dying, cultural practices and stigma prevailing in the society. They sometimes, in desperation, resort to certain cultural practices which cause more harm to the child.
With an increasing number of children being diagnosed with life limiting or life threatening conditions resulting in severe disability , suffering and sometimes premature death, there is need for serious reappraisal to look at various ways to improve access to paediatric palliative care in LMIC. In this context, the pioneering work being done by many NGOs are commendable. This is influencing policy makers both at the federal and state levels to effectively integrate paediatric palliative care into the public health system.
Dr Gayatri Palat
Professor, Pain and Palliative Care
MNJ Institute of Oncology and RCC, Hyderabad, India
Consultant, Two Worlds Cancer Collaboration, Canada
Member, Board of Trustees, ICPCN
Founder member, Pain Relief and Palliative Care Society, Hyderabad
- Connor SR, Downing J, Marston J. Estimating the global need for palliative care for children: A cross-sectional analysis. J Pain Symptom Manage. 2017;53:171-7.
- Kellie SJ, Howard SC. Global child health priorities: what role for paediatric oncologists?Eur J Cancer (2008) 44(16):2388–96.
- Planning and Implementing Palliative Care Services: A Guide for Programme Managers [cited January 8, 2018]. Available from: http://apps.who.int/iris/bitstream/10665/250584/1/9789241565417-eng.pdf.
- Global Atlas of Palliative Care at the End of Life (2014). Available from: http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf