Perceptions Of The Parents Of Deceased Children And Of Healthcare Providers About End-Of-Life Communication And Breaking Bad News At A Tertiary Care Public Hospital In India: A Qualitative Exploratory Study

Author summaryThe parents of terminally ill and dying children face unimaginably psychological stress and have strong need for compassionate professional support. To improve the parents and family experience, there is need for obtaining feedback and documenting the experiences of parents, family and healthcare providers with reference to the local contexts. There is limited information on parents experience on end-of-life communication related to their child death from Indian context. An exploratory qualitative study was conducted at a tertiary care hospital in India involved in-depth interviews with parents and family of deceased children and healthcare providers (HCPs: doctors, nurses and support staffs) involved in treating children. Parents remembered the communication by junior doctors as brief, inappropriate and insensitive, while the senior doctor's communication was positive and complete. The death declaration by resident doctors was remembered as non-empathetic, blunt and cold. No emotional support was received by them around and after child's death. The doctors were affected emotionally with death of the patients, but were constrained with high workload, infrastructural limitations and lack of training in communication. Preparation of context specific, sociocultural appropriate module and communication training for HCPs can improve their competence for providing end-of-life care, breaking bad news and also parents experience.BackgroundParents of dying children face unique challenge and expect compassionate support from health care providers (HCPs). This study explored the experiences of the parents and HCPs about the end-of-life care and breaking bad news and related positive and negative factors in Indian context.MethodsThis qualitative exploratory study was conducted at paediatrics department of a tertiary care hospital in Delhi. In-depth interviews with the parents (n = 49) and family members (n = 21) of the children died at the hospital and HCPs (6 doctors, 6 nurses and 4 support staffs) were conducted. Also events and communication around death of eight children were observed. Data were inductively analysed using thematic content analysis method to identify emerging themes and codes.ResultsDoctors were the lead communicators. Majority of parents perceived the attitude, communication and language used as by resident doctors as brief, insensitive and sometimes inappropriate or negative. They perceived that the attitude and communication by senior doctor's as empathetic, positive and complete. Parents recalled the death declaration by resident doctors as non-empathetic, blunt and cold. Most parents received no emotional support from HCPs during and after death of their child. All doctors expressed that death of their patients affected them and their emotions, which they coped through different activities. The overcrowded wards, high workload, infrastructural limitation and no formal communication training added to the emotional stress of the HCPs.ConclusionsMajority of the communication by the HCPs during the hospitalisation and end-of-life period were perceived as suboptimal by the parents. The HCPs were emotionally affected and faced end-of-life communication challenges. The study highlights the communication by HCPs and support for parents during the end-of-life communication and breaking bad news. It suggests adoption of context specific communication protocol and materials and training of HCPs in communication to improve the quality of care.