Since 2019, Niloufer Hospital for Women and Children in collaboration with the Pain Relief and Palliative Care Society (PRPCS) of Hyderabad has been delivering children’s palliative care services supporting neonates, children, and adolescents. On April 15, 2024, the relationship was formalised with the signing of a Memorandum of Understanding (MOU) between Niloufer Hospital and PRPCS.
The goal of this MOU was to initiate and integrate a Perinatal Palliative Care Programme within the Obstetrics and Gynaecology Department, to better support families experiencing a pregnancy, where the baby has been diagnosed with a serious, life-threatening or life-liming condition during the pregnancy.
After signing the MOU, palliative care leaders and experts from PRPCS provided a sensitisation programme for clinicians in the Obstetrics and Gynaecology Department, following which we had a detailed discussion on establishing a proper system in place for appropriate identification, referrals, follow up, and document process.
Perinatal Palliative Care is a specialised area within Children’s Palliative Care, which focuses on maximizing quality of life and comfort for newborns with a variety of conditions considered to be life-limiting in early infancy. Perinatal palliative care also involves providing psychosocial and spiritual support during pregnancy, helping families understand their child’s condition, to enable shared decision making which respects parents’ cultural beliefs and values. The Perinatal Palliative Care Team of PRPCS is supported by paediatric palliative care specialist physician, nurses and counsellors.
Since signing the MOU, Perinatal Palliative Care has been enthusiastically embraced by the Department, demonstrating the pressing need for palliative care to support families facing the uncertainty and challenges of a pregnancy complicated by a baby with a serious illness.
Since Niloufer Hospital is a quaternary referral hospital, where women with high risk pregnancies are referred, there are a substantial number of parents who will benefit from the support of the skilled clinical services of the Perinatal Palliative Care Programme. After delivery, parents and babies born will continue to be supported by the Children’s Palliative Care Programme of PRPCS, including access to home care and to the Mandara childrens’ Hospice, where children and families can stay and receive specialised palliative care in a home-like setting.
Thus far, ten families have received Perinatal Palliative Care for conditions ranging from complex heart, brain, musculoskeletal, kidney and gastrointestinal conditions. The Perinatal Palliative Care Team has been able to provide holistic supports for prospective parents as providing counselling and support as they face the challenges of a pregnancy complicated by a serious illness, and then supporting the baby and family during delivery and thereafter.
This programme is the first Perinatal Palliative Care programme in the region and the team aims to develop and grow the service, while also providing training to obstetrical health workers to raise awareness about the importance of palliative care and how best to support families facing these challenging situations.
Great initiative. Congratulations
Great work