Ethical research in palliative care: A guide through the Human Research Ethics Committee process

This booklet aims to provide a guide to the research community wishing to conduct ethical research in palliative care. The need for this booklet has arisen in response to the expanding provision of palliative care services and associated research in Australia.

In October 2000 the Australian Health Ministers Advisory Council (AHMAC) endorsed the National Palliative Care Strategy. The Strategy is a partnership between the Australian Government, State and Territory governments, palliative care service providers and community-based organisations. It is designed to guide the development and implementation of consistent Australian palliative care policies, strategies and services and to promote the delivery of quality palliative care that is accessible to all people who are dying.

A core objective of the Strategy is to ensure that good quality evidence is available on how to best provide palliative care. In more recent years, this has led to increased impetus for palliative care research through the establishment of a specific program of research with the National Health and Medical Research Council.

However, palliative care researchers have reported difficulties in obtaining Human Research Ethics Committee (HREC) approval for their projects. In addition, a number of important research projects, funded through the National Palliative Care Program and the NHMRC administered Palliative Care Research Program have been subjected to lengthy delays as result of the difficulties in gaining HREC approval.

Researchers in the field perceive that some HRECs are over cautious in the application of the guidelines outlined in the National Health and Medical Research Council’s (NHMRC) National Statement on Ethical Conduct in Research Involving Humans1 (referred to throughout the remainder of this booklet simply as the National Statement) and believe that some HRECs are unaware of the potential benefits of palliative care to terminally ill patients and their families.

Some issues have been identified as being of particular significance to palliative care and each is covered in later sections of this booklet:

• The risks and benefits of palliative care research

   

   

• Informed consent

   

   

• Patient vulnerability

   

   

• Balancing the role of clinician and researcher

   

Researchers can educate and inform HREC members on the overall benefits of high quality research into palliative care by adopting a rigorous, informed and consistent approach to writing HREC applications. This booklet is designed to be of immediate benefit to new researchers funded through the National Palliative Care Program and also to assist the broader research community wishing to conduct ethical research in palliative care.

copyright Commonwealth of Australia reproduced by permission.