Using a frame of reference for talking to patients about death and dying

In his poem When I Die, the 13th century Persian poet Mewlana Jalaluddin Rumi wrote:

‘When for the last time you close your mouth your words and soul will belong to the world of no place no time.’

As Rumi observes, the mystery of death is indeed without time or place. However, dying itself is an experience that health professionals are increasingly trying to contextualise and understand, with the aim of easing the distress of the mystery, both at the point of death and its related consequences to life and living. In doing so, health professionals support their patients to take control and achieve a sense of clarity, acceptance and understanding, not only about the life lived but also its imminent ending.

The importance of talking openly to terminally ill and end-of-life patients about death and dying has increasingly garnered attention over the past few decades (Seymour et al, 2010). Key national organisations such as Marie Curie, Macmillan Cancer Support and Dying Matters, among others (see Box 1), have encouraged and supported a range of programmes designed to promote transparency between staff and patients around thoughts and feelings about death and dying. These have included media adverts and news articles, as well as conferences and multidisciplinary training aimed at promoting awareness among professionals. They have also worked with government bodies to ensure that policies for terminally ill patients include provision for their psychosocial needs. However, there is no clear frame of reference to support staff in supporting dying patients, and directions and details are left largely to individuals and teams to identify and implement.