Palliative Care Needs among Patients with Advanced Illnesses in Bhutan

Abstract

Background: Palliative care improves the quality of lives of patients and families affected by advanced illnesses through the prevention and relief of suffering. While palliative care is well established in developed countries, it is inadequate or non-existent in most developing countries. Palliative care is an emerging concept in Bhutan, a tiny Himalayan Kingdom. A small community palliative care service is available in the national referral hospital with three dedicated inpatient palliative care beds. This study explored the needs for palliative care among patients diagnosed with advanced illnesses and is a component of a larger project aimed to inform a suitable palliative care model for the country. Methods: This is a cross-sectional descriptive study. A survey, using a structured questionnaire including the EORTC QLQ-C30, was carried out among patients with advanced illness in hospitals, primary care units and communities across the country. Purposeful and snowball sampling strategies were used to recruit study participants. Results: Seventy (76%), out of 93 eligible patients, agreed to participate in the survey. Participants reported low to moderate scores on physical, role, emotional, cognitive and social functioning, a moderate score for the global health/ quality of life scale and moderately high (worse) scores in symptoms including fatigue, pain, insomnia, loss of appetite and the financial impact from the disease. Conclusions: The symptom burden experienced by patients affected by advanced illnesses demonstrates the need for palliative care in Bhutan. These findings will help inform the development of a public health-focused palliative care model, modified to the Bhutanese context, as recommended by the World Health Organization.

Support Needs for Bhutanese Family Members Taking Care of Loved Ones Diagnosed with Advanced Illness

“…Despite our small sample size, the study found that family members caring for non-cancer patients for less than one year were more likely to report high support needs than those caring for more than one year. With regard to diagnosis, although all patients in the concurrent study 28 wanted to know their diagnosis, not all family members in this study were willing to disclose, mainly for fear of causing additional distress and hopelessness. Willingness to disclose a diagnosis, particularly of incurable cancer, is known to depend on social context, cultural norms and family traditions.…”

“…11 Accordingly, for Bhutan, PC needs among patients with advanced illnesses was explored. 28 Concurrently, besides this study, studies on the perspectives of healthcare professionals on the need for PC and how it should be delivered are underway. The findings of these studies are expected to drive policy changes to integrate PC into the Bhutanese healthcare system.…”

“…47 In Kerala (India), the Trivandrum Institute of Palliative Sciences support families through food kits, financial help and educational opportunities for children who are at risk of dropping out of school due to poverty aggravated by family illness. 48 In Bhutan, since financial support was also a significant need among patients with advanced illness, 28 PC services should include financial support as a key element.…”

“…27 Over the years, the need for PC in the country has been emphasized. 21,28,29 Despite being a small and sparsely populated mountainous nation, the socio-economic circumstances in Bhutan are similar to many developing countries. Like elsewhere in the region, Bhutanese family members play a vital role in patient care, both in hospitals and at homes.…”

Psychometric Properties of the ‘Patients’ Perspective of the Quality of Palliative Care Scale’

“…Article in Press non-malignant diseases. [4] Palliative care is comprehensive and holistic care provided to patients by an interdisciplinary team of physicians, health-care providers, nurses, psychologists and social workers during hospitalisation and even after discharge. [5] Palliative care is aimed to provide physical, psychological, social and spiritual support to patients with chronic diseases and those in the end stages of life as well as their families through the prevention of suffering.…”