Palliative Care Research: Indian Perspective

Big constructions require strong base to remain stable. Same is the case with science, more so with medical sciences, which requires research as its strong base.

Research has always been an integral part of practice of medical sciences in India. Sushrutasamhita and CharakhSamhita are medical research works compiled during the Vedic period dating back to thousands of years ago.

Despite guiding the world on research methodologies and techniques during ancient times, what has gone wrong during the modern times that India is lagging behind on research front of modern sciences? Current article deals with this important issue.

Practice of evidence based clinical medicine is not being followed in most of the medical schools in India.[1] Data by Index Medicus show that in 1998, India's contribution to world's medical research was only 0.714%.[2] Many reasons have been cited for that namely - lack of infrastructure, fast evolving medical sciences which leads to discrepancy in the amount of knowledge available and knowledge grasped by the faculty and students, hesitation on part of faculty and consequently on students to use modern technologies for research.[3] Some authors also hold brain drain responsible for this phenomenon.[4] Moreover, medical education in India was tailored to the creation of a basic community oriented doctor with less emphasis on research.[4]

Research quotient is even lesser in the field of palliative medicine in India. Most part of whatever little research taking place in the field of palliative medicine in India is in government medical schools. Probable reason is favorable result oriented practice in private hospitals. Hence, in India, palliative medicine researches are still considered a luxury in the face of scarce resources.[5] Palliative care researchers struggle world over for funds to conduct good quality researches. Thus, the research scenario in India is not very different from other more resource- rich countries.[5] Several countries do not have chairs in palliative care, with no clear trend of chairs emerging either.[6] Hence, in India the research scenario in palliative medicine may not be very encouraging but not very dismal either. We are slowly and steadily moving in the right direction.

Statistics from the publication data of the Indian Journal of Palliative Care, of which, I am the Chief Editor, reveals that. In the year 2009, out of 59 articles received for publication 42 got published. In the year 2010, out of 72 articles received for publication 50 were published. In the year 2013, we received 117 articles out of which 69 were accepted and 48 were rejected. In 2014, until now, we received 90 articles out of which 49 are accepted and 41 are already rejected. So, while this data show that the quantity of research work has definitely increased, quality is definitely not up to the mark. Until now, we were getting good articles on quality of life; however, in last few months we are also receiving well-designed randomized control trials.

The issues, which can improve the palliative, care delivery and the areas where evidence of practice is still weak can be identified by forming network and collaborative groups for the application of study and research methodologies in India.[7] Some authors have also suggested that unless the government and universities make it mandatory for research scholars and faculty members to publish papers in indexed journals, the quality of research will remain low.[4]

Palliative care research is often confronted with many ethical dilemmas and barriers. Research related issues include vulnerability of the study population, inability to give consent to participate, high levels of emotional distress and invasiveness and appropriateness of a test/intervention in a given study population. Ethical concerns specific to palliative care research are difficulty in assessing the risks and benefits of research participation, randomization, and difficulty assessing participation capacity. Methodological challenges in palliative care research include high rates of loss to follow-up due to physical and mental incapacity and death, the biases introduced by the need for surrogate respondents, and the difficulty of determining appropriate outcomes and methods for assessing those outcomes. However, all the above mentioned challenges should not hinder research as lack of high quality research in palliative care in comparison to non-palliative care setting could limit scientific and rational basis for treatment of patients afflicted with life-limiting illness.[8]

Time is now ripe for us to initiate steps to stimulate a climate that promotes increased research work both quantitatively and qualitatively by promotion of possible innovations and newer strategies.