Improving access to children living with life limiting conditions; Hyderabad experience
– Dr. Gayatri Palat, Dr. Spandana Rayala, Dr. Mohammed Ishak Tayoob, Hyderabad
When a child receives a diagnosis of a life limiting condition like Tay-Sachs disease or stage 4 cancer with multiple complications, the family is often left confused, lost and directionless regarding how best to provide care for their ailing child. Most hospitals are geared to deliver acute and intensive care; which on most occasions are not in best interests of these children. The already shattered families are then left at crossroads with only two treatment options to chose from: provide care at Home or in an ICU. A nerve wrecking and tough choice! Choosing to treat at home may mean that they are not equipped to deal with the various symptom burdens; and choosing to treat their child at the ICU means that they are unable to visit and spend time with the child. So, how can these children then be provided with the care they rightfully deserve? These goals can be accomplished by Pediatric Palliative Care services.
Pain Relief and Palliative Care Society (PRPCS) is one of the largest palliative care service providers in the region. Its services include a 20 bed hospice, an extensive community based home-base program covering the city of Hyderabad, and an exclusive and perhaps unique pediatric palliative care program that caters to both cancer and non-cancer patients. It is also unique because it is embedded within the state’s public health care system and offers the choice of early integration of palliative care.
The pediatric program of PRPCS has the following components:
- Supporting the Outpatient and In-patient palliative care services in the pediatric oncology program of MNJ Institute of Oncology and RCC, manned by a team of pediatric palliative care physician, nurse and counselor.
- Supporting the Out-patient and In-patient palliative care services in the Niloufer Children’s Hospital, a tertiary referral hospital for the state of Telangana, manned by a senior pediatric palliative care physician, nurses and counselors.
- An exclusive home-based care for taking of children in their homes.
- A 24 hour phone and video consultation by the pediatric palliative care team to support children and their families.
- A 10 bed exclusive children’s hospice named, ‘Mandara’ (Hibiscus), which is located in a sylvan surrounding and which is manned 24 hours by a team of doctors, nurses and social workers. The assimilation of our (PRPCS) efforts in providing quality palliative care to the needs of these vulnerable children over several years has culminated in the birth of our Mandara Hospice. The hospice is a cocoon for these suffering children and their exhausted families as they are protected, nutured and empowered with various mechanisms to best deal with the disease and it’s progression. The child and the family are advised discharge once the symptoms are stabilized and are followed up via our dedicated home care program or phone call follow up.
On an average 100 children are referred for palliative care every month in MNJ and Niloufer children’s hospital respectively. Additionally, an approximate 20 new children are admitted in the hospice every month and 150 children being registered under the home care program at any point of time. All the services are offered entirely free of cost.
PRPCS has also been in the forefront of conducting research and offering training and education programs in the field of pediatric palliative care. It offers a one-year fellowship in pediatric palliative care in partnership with Two Worlds Cancer Collaboration, Canada and endorsed by Royal College of Pediatrics and Child Health (RCPCH), UK. It also offers various other training courses like Pediatric palliative care ECHO for health workers and post graduate students in India and other neighboring countries like Nepal, Sri Lanka, Bangladesh, Philippines etc.
Another unique aspect of our program is our Public-Private-Partnership (PPP) model along with our very supportive State Government to facilitate the provisioning of PC in all of Telangana’s 33 district palliative care centers. This partnership has come as a boon for all those children residing in the remote areas of the state, as they now have access to palliative care including oral morphine from the centers closest to their homes. The programs have also enormously benefitted innumerable children, particularly those suffering from non-cancer life limiting diseases who would otherwise have absolutely no access to palliative care. Our successful partnership with the Government hospitals and the Government district palliative care centers, have therefore immensely improved the access to palliative care across the state.
Service utilization also instills hope among caregivers as they prepare to face their worst nightmare and the unimaginable. The death of their loving child. Having access to these services ensures that the child does not die in pain or face death alone at home or in an ICU. Rather, it can now be a peaceful process with well-controlled symptoms and with the opportunity for the family to be by the child’s bedside. This is a model, which can be easily replicable.
No child has to die. No child should die. However, the truth sometimes is farthest from our wish. So, we do the next best possible thing. For those children who cannot be cured, for those who are suffering, we try to deliver our years of medical experience with compassion and empathy. No child should suffer. Ever.
About the authors:
Dr. Gayatri Palat wears multiple hats. She is a Consultant, Pain and Palliative Medicine at MNJ Institute of Oncology and RCC, Hyderabad, India. She is also the Director at the PAX Asia Program, Two Worlds Cancer Collaboration, Canada and is a DonRix Personal Professorship of Palliative Medicine.
Dr. Spandana Rayala and Dr. Mohammed Ishak Tayoob are Pediatric Palliative Care Consultants at Pain Relief and Palliative Care Society, Hyderabad, India.