Researchers have been researching research - seeking to understand why end of life research can be so difficult...

In 2003 the British Medical Journal (BMJ) asked the important question, 'What is a good death?' Unfortunately though, their contributors decided that they couldn't answer the question - there just wasn't enough evidence!

In direct response to this, the Primary Palliative Care Research Group of the University of Edinburgh collaborated with St Columba's Hospice in Edinburgh and the Cancer Care Research Centre at the University of Sterling in order to try to find out why there is such a dearth of evidence. Their resulting paper, Key challenges and ways forward in researching the "good death", was published in a recent, 2007 edition of the British Medical Journal. The groups' work, a qualitative in-depth interview and focus group study, made some interesting, if predictable, conclusions:

  • There are ongoing taboos around the subject of death and dying.
  • These taboos act as barriers to end of life research.
  • Many terminally ill people want to participate in research, and should be permitted to do so.
  • 'Ethics committees and clinical staff must balance understandable concern about non-maleficence with the right of people with advanced illness to participate in research.'
  • 'End of life research can be conducted with ethical and methodological rigour.'

Perhaps more interesting though was the editorial in the same BMJ issue, discussing the research and its implications. Looking at the dramatic variations in end of life treatment intensity for some hospital patients, the editor noted, 'the reality of death is frequently overlooked' and that 'the tendency of doctors to overestimate survival probably contributes to a failure to focus upon providing a good death'. He then quoted other research, showing that not prolonging the dying process and having open honesty from doctors are amongst the most important things terminally ill patients want. His final conclusion: 'Ideally, communication about death and dying should enhance the dignity of help ensure a good death for all' (emphasis ours). We applaud this aim.