Institutional end-of-life care policy for inpatients at a tertiary care centre in India: A way forward to provide a system for a dignified death

Abstract

India has a high share in the global burden of chronic terminal illnesses. However, there is a lack of a uniform system in providing better end-of-life care (EOLC) for large patients in their terminal stage of life. Institutional policies can be a good alternative as there is no national level policy for EOLC. This article describes the important aspects of the EOLC policy at one of the tertiary care institutes of India. A 15 member institutional committee including representatives from various departments was formed to develop this institutional policy. This policy document is aimed at helping to recognize the potentially non-beneficial or harmful treatments and provide transparency and accountability of the process of limitation of treatment through proper documentation that closely reflects the Indian legal viewpoint on this matter. Four steps are proposed in this direction: (i) recognition of a potentially non-beneficial or harmful treatment by the physicians, (ii) consensus among all the caregivers on a potentially non-beneficial or harmful treatment and initiation of the best supportive care pathway, (iii) initiation of EOLC pathways, and (iv) symptom management and ongoing supportive care till death. The article also focuses on the step-by-step process of formulation of this institutional policy, so that it can work as a blueprint for other institutions of our country to identify the infrastructural needs and resources and to formulate their own policies.

Keywords: EOLC policy; India; end-of-life care; formulation; implementation; institution.

Fig. 1

The existing barriers for practicing end-of-life care at our institution, as perceived by the physicians of the expert committee.

Fig. 2

Summary of end-of-life care policy.

Fig. 3

Trend showing end-of-life care referral over one year (March, 2019- February, 2020).

Fig. 4

Bar chart showing the break-down of end-of-life care referrals between malignant and non-malignant cases six months before and six months after institutional end-of-life care policy discussion.