Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India

Abstract

ObjectivesThis study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar.DesignThis was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion.SettingAll interviews took place in a secondary care hospital in Patna, Bihar which provides holistic care to critically unwell PLHA.ParticipantsWe purposively selected 29 participants: 10 critically unwell PLHA, 5 caregivers of hospitalised patients, 7 relatives of deceased patients who were treated in the secondary care hospital and 7 key informants from community-based organisations.ResultsCritically ill PLHA emphasised the need for psychosocial counselling and opportunities for social interaction in the ward, as well as a preference for components of home-based palliative care, even though they were unfamiliar with actual terms such as ‘palliative care’ and ‘end-of-life care’. Critically unwell PLHA generally expressed preference for separate, private inpatient areas for end-of-life care. Relatives of deceased patients stated that witnessing patients’ deaths caused trauma for other PLHA. Caregivers and relatives of deceased patients felt there was inadequate time and space for grieving in the hospital. While both critically ill PLHA and relatives wished that poor prognosis be transparently disclosed to family members, many felt it should not be disclosed to the dying patients themselves.ConclusionsDespite expected high inpatient fatality rates, PLHA in Bihar lack access to palliative care services. PLHA receiving end-of-life care in hospitals should have a separate dedicated area, with adequate psychosocial counselling and activities to prevent social isolation. Healthcare providers should make concerted efforts to inquire, understand and adapt their messaging on prognosis and end-of-life care based on patients’ preferences.

Experiences of Patients with Advanced Chronic Disease Transitioning to Palliative Care in Low- and Middle-Income Countries: A Scoping Review

“…Many patients miss out on the benefits of palliative care because they are not aware of it or what it can offer to improve their quality of life. [15,20] This review has also shown that many people have misconceptions about palliative care, believing that palliative care is only for use in the final stages of life and discouraging early access. As a result, patients are missing out on potentially helpful therapies and causing unnecessary suffering.…”

“…When asked about palliative care, patients valued medication changes that alleviate suffering, even if the medications did not lead to a cure. [15,16] Two studies from Bangladesh and Kenya showed that patients' knowledge of their cancer condition and its causes was incomplete, contributing to misconceptions about the illness. Patients' lack of awareness of their own condition contributed to delays in diagnosis, treatment, and access to vital palliative care.…”