A National Rollout of an Insufficiently Evaluated Practice: How Evidence Based Are Our End-Of-Life Care Policies?

Dear Editor:

There have been increasing international efforts to ensure that health care policies are evidence based. One area where there is a lack of “effectiveness” evidence is in the use of end-of-life care pathways (EOLCP). ¹ Despite the lack of evidence supporting the efficacy of the EOLCP, their use has been endorsed in the recent national palliative care strategy document in the UK. ² In addition, a publication endorsed by the Australian government (titled: Supporting Australians to Live Well at the End of Life—National Palliative Care Strategy 2010), ³ recommended a national rollout of EOLCP across all sectors (primary, acute, and aged care) in Australia. According to this document, it is a measure of “appropriateness” and “effectiveness” for promoting quality end-of-life care.

To date, there have been no rigorous clinical trials suggesting the effectiveness of the EOLCP in improving the outcomes in patients, their family members, and health professionals. ¹ Despite recent concerns in relation to potential adverse effects associated with EOLCP, no formal investigations have been conducted to report adverse events. ¹ Although the challenges in conducting clinical research for the dying are well recognized, an Italian research team acknowledges the importance of generating evidence to inform practice in this area and is currently conducting a cluster randomized controlled trial to test the effectiveness of the Liverpool care Pathway. ⁴ In a 2010 editor's note in this journal, Currow states that palliative care professionals indeed “can (and do) cause harm” by our care, “but fail to measure it accurately.” ⁵

When an EOLCP becomes standard care in an organization/facility, it may become unethical for a controlled study to be conducted (for example, comparing clinical and quality outcomes when using an EOLCP, or not using an EOLCP). In other words, a national rollout of an insufficiently evaluated practice can impede the conduct of research and may be ethically flawed. We argue that policy makers may not have fully considered the existing evidence before rolling out the policy and suggest that it may have been more efficacious to spend the rollout money on original research, which could provide solid evidence for practice.