Multilevel model of stigma and barriers to cancer palliative care in India: a qualitative study

Abstract

IntroductionPalliative care coverage and opioid consumption in India are relatively low compared with global data. The literature suggests commonplace concealment and collusion in withholding information, but these hypotheses lack evidence.ObjectivesThis study aimed to develop an explanatory evidence-based model of stigma, communication and access to cancer palliative care in India that can be used to develop, test and implement future interventions.DesignThis cross-sectional qualitative study sampled advanced cancer patients (n=10), their family caregivers (n=10) and oncologists (n=10). Grounded theory procedures were utilised to analyse transcripts, and a theoretical model generated.SettingA tertiary teaching hospital in South India.ResultsThe model explains how stigma associated with communicating a diagnosis of advanced cancer is enacted by treating oncologists, family members and community. This leads to patient expectations of cure and futile treatment uptake. Patients commonly only present needs with respect to pain, not within psychological, social or spiritual domains, likely due to the lack of patients’ insight into their diagnosis and prognosis. As a result of oncologists’ and families’ unwillingness to disclose the prognosis, and patient focus on pain due to their lack of insight, palliative care clinicians view their services as under-utilised, and patients perceive palliative care as a pain management service that is not ‘different’ from other clinical services. Advanced care needs and purchase of futile treatments lead to lost employment among families, increased family debt and high care costs, which are rarely disclosed due to their unwillingness to discuss their needs.ConclusionOur novel theoretical model is an essential first step to ensure that complex interventions are plausible, with mechanisms of action that address the needs of relevant stakeholders. A family-centred approach with an oncology workforce skilled in communication and an enabled patient population could increase access to palliative care, and improved outcomes may be attainable.

A Systematic Review on Barriers to Palliative Care in Oncology

“…The 29 studies identified included 8 quantitative studies, [25][26][27][28][29][30][31][32] 18 qualitative studies, [34][35][36][37][38][39][40][41][42][43][44][45][46][47][48][49][50][51] and 3 mixed-methods studies. [52][53][54] The sample size ranged from 10 participants to 313 participants.…”

“…Seven studies examined the barriers to PC utilization related to persons with cancer and their family. 29,30,35,40,42,49,50 The most common patient-related barriers included negative images/ stereotyping of PC, denial of the terminal nature of the disease/unrealistic expectations, and economic/logistic barriers. These are discussed below.…”

“…Some studies found patients and families possessed negative stereotypes about PC and lacked knowledge and awareness about PC, 29,30,42 lacked knowledge about their disease trajectory, 49 and felt stigmatized by their communities following the cancer diagnosis. 35 They believed that PC required forgoing cancer therapy and equated PC with EOL care. 49 In addition, patients and families reported that physicians described PC as pain management services 35 and did not discuss or refer them to PC.…”

The Question‐prompt list (QPL): Why it is needed in the Indian oncology setting?

“… 4 , 62 , 63 On the other hand, family involvement during the illness can result in collusion, selective sharing of information with the patient, and nondisclosure of the diagnosis which may hinder patients' well‐being. 1 , 64 , 65 Through their study in South India, Harding, Nair, and Ekstrand 66 reported the long‐lasting impact of cancer nondisclosure to the family in terms of lost employment and increased debts due to medical costs. The authors highlight families' lost opportunities to talk about their patient's psychological and spiritual needs due to collusion, * suggesting suboptimal use of healthcare services and family support.…”

Integrating dentistry into palliative medicine - Novel insights and opportunities

“…5 Palliative care is a global human right, to be provided 'throughout the illness course'. 6 According to Obadan-Udoh et al "providing care that is patient-centered is an indication of quality and that should be our ultimate goal. Dental profession has huge challenges in meeting these expectations."…”