Bolivian Health and Social Care Professionals' Experiences of Decision Making in Oncology and Palliative Care

Abstract

Bolivian health and social care professionals' experiences of decisionmaking in oncology and palliative care Roulston, A., & Haynes, T. (2015). Bolivian health and social care professionals' experiences of decision-making in oncology and palliative care. In the United Kingdom, end-of-life care strategies recommend patients and families are involved in decision-making around treatment and care. In Bolivia, such strategies do not exist, and access to oncology services depends on finance, geography, education and culture.Compared to more developed countries, the delivery of oncology services in Latin America may result in a higher percentage of patients presenting with advanced incurable disease.The objective of this study was to explore decision-making experiences of health and social care professionals who cared for oncology and palliative care patients attending the Instituto Oncológico Nacional, Cochabamba (Bolivia). Patients were predominantly from the Quechua tradition, which has its own ethnic diversity, linguistic distinctions, and economic systems.Qualitative data were collected during focus groups. Data analysis was conducted using Interpretative Phenomenological Analysis. Three interrelated themes emerged: (1) Making sense of structures of experience and relationality; (2) Frustration with the system; and (3)The challenges of promoting shared decision-making. The study uncovered participants' lived experiences, emotions and perceptions of providing care for Quechua patients. There was evidence of structural inequalities, the marginalisation of Quechua patients, and areas of concern that social workers might well be equipped to respond to, such as accessing finances for treatment/care, education and alleviating psychological or spiritual suffering.

Do published patient decision aids for end-of-life care address patients’ decision-making needs? A systematic review and critical appraisal

“…39 Both families and patients wanted the involvement of more and different healthcare professionals during decision-making, 55,61,67,71,73 to increase the breadth of information and support available to them. 73,74 Finally, patients largely wanted to involve their families more during decision-making, 57,60,62,67,75 for either practical or emotional reasons, 64,70,76 and expected healthcare professionals to recognise their family members as 'involved [and equal] decisional parties' in shared decision-making. 32,60,64,67,70,72 However, the extent to which patients wanted involvement of their family members during decision-making varied between individual patients; patients allocated variable levels of influence to family members, 32 needing to balance family involvement with their own decisional autonomy.…”